PatHligHt - Pulmonary Hypertension Association

Transcripción

A newsletter of the Pulmonary Hypertension Association
0 Summer 2012 0 Volume 21 No. 3
Pathlight
Highl ights
PHenomenal Lives
3
International Faces
5
Conversations in
Caregiving
8
Our Journeys
12
Health Matters
14
Ask a PH Specialist
14
Meet the Doctor
17
“Helpful Hints”
19
Research Corner 21
Advancing the Cause 22
National Call-In Day
26
Media Tips
28
Support Groups
34
Special Events
38
Community Classroom 41
PHenomenal Youth
45
Family PHocus
47
ON THE
ROAD
PHA on the Road:
Coming to New Cities in 2012!
I
f you didn’t get a chance to
attend PHA’s 10th International PH
Conference and Scientific Sessions
in June — or even if you did and
just want to learn more — you’re
in luck! PHA is heading to two new
cities this year with PHA on the Road:
PH Patients and Families Education
Forums! PHA on the Road is a FREE,
full-day regional education forum
that provides patients and families
with opportunities to further their
pulmonary hypertension education
and network with other PH community
members in their area.
In fall 2012, PHA will be stopping
in New Brunswick, N.J., (Sept. 8) and
the Chicago, Ill., area (Oct. 13). We
will be bringing together experienced PH
medical experts from the local areas
to present on a variety of PH-related
topics and interact with attendees.
The PHA on the Road forums
will feature interactive presentations,
general sessions and exhibits
regarding the symptoms, diagnosis and
treatment of pulmonary hypertension.
Sessions will also cover the practical
challenges of living and coping with the
disease and lifestyle issues such as
eating better and exercising.
Attendees of PHA on the Road will
have the unique opportunity to network
with others in their local regions from
patients and caregivers to medical
professionals. Each forum will provide
pre-forum support group sessions for
attendees to learn from each other.
Groups will be held for newly diagnosed
patients, veteran patients, caregivers
and parents of children with pulmonary
hypertension.
Participation in PHA on the Road
story continued on page 42
M e s s a g e f r o m ph a ’ s b o a r d c h a i r
Laura Hoyt D’Anna, DrPH
Dear Friends,
My two-year term
is complete and this
will be my last letter
to you as Chair of the
Board of Trustees
of this amazing
organization that is
a lifeline for so many of us. As is PHA’s
tradition, our incoming Chair, Dr. Vallerie
McLaughlin, assumed leadership of our
Board at the end of our 10th International
PH Conference and Scientific Sessions
in June. As a cardiologist, PH expert,
and former Scientific Leadership Council
(SLC) Chair, Val has a long history
of contributions to PHA and the PH
community in general, and PHA will
benefit greatly from her service in this
role!
Time passes so quickly! Over the
past two years, there have been many
accomplishments by our PHA staff,
Board, SLC and PH community —
increases in the number of physicians
and allied healthcare professionals
involved in furthering PHA’s mission;
diversity in the venues at which medical
education is delivered; enhancements
in the programs available to patients,
families and caregivers tailored to unique
needs; increased involvement within the
international PH community; increased
funding for PH-related research with
a spotlight on pediatric research; and
improved awareness of PH. However, as
I look to the future, there is one PHA-
driven initiative that stands out among
those that have the greatest potential to
alter the course of this disease — our
Early Diagnosis Campaign.
As all of you are painfully aware, PH
can result from more than 30 known
causes. It is little-known among general
practitioners and is characterized
by unspecified symptoms, is often
misdiagnosed, and most certainly is
underdiagnosed. Even for the form of
PH for which significant advances in
understanding the etiology have been
achieved (pulmonary arterial hypertension
[PAH]), the time from onset of symptoms
to recognition of the disease has not
improved over the past two decades,
according to a recent study conducted by
Dr. Lynette M. Brown and others (2011).
Upon being presented with
this information during our October
2011 Board meeting, our Trustees
unanimously agreed that this is simply
“unacceptable” and that PHA must
take the lead in attempting to improve
this statistic. Thus, the Early Diagnosis
Campaign emerged. The slogan for this
effort is, “In the medical world, doctors
are taught: ‘When you hear hoof beats,
think horses, not zebras.’ But sometimes
it is a zebra, and sometimes it is PH.”
The Board has made this campaign
a central focus of PHA’s activities, and
PHA staff have hit the ground running
with its implementation! Stay tuned for
more information on this campaign in
future issues of Pathlight and be sure to
check out www.SometimesItsPH.org.
Without a doubt, being selected
by my peers to serve in this role has
been among the greatest honors of my
life — second only to being mom to my
two beautiful children and big sister to
Rachel, who lost her battle to PH at the
age of 24. To my friends and colleagues
who serve by my side on the Board, I
am forever grateful for this opportunity
— thank you. I am convinced that
there is not a finer, more generous and
dedicated group of people amassed for
any cause than those who work on our
volunteer Board. I cherish your friendship
and the knowledge I have gained from
each of you.
To our accomplished President/
CEO, Rino, and our wonderful PHA staff
— you never cease to amaze me! Your
dedication and creativity go above and
beyond, and you consistently prove that
anything is possible. To our talented and
expert SLC, PH Professional Network
and PH Clinicians and Researchers —
thank you for leading the science and
for providing models for excellence in
patient care. And, to our lovely patients
and their families — you inspire us to
push harder, reach higher, and achieve
our vision of life free from PH.
In loving memory of Rachel and with
hope for what the future will bring,
pathlight: a user’s guide
PHenomenal
Lives
Health
Matters
Advancing
the Cause
Look for this icon to direct you
m e d i c a l p r o f e s s i o n a l s to important information for
healthcare providers.
2
Community
Classroom
PHenomenal
Youth
international
news
Family
PHocus
Look for this icon throughout
Pathlight to read news from around
the world.
www.PHAssociation.org PATHLIGHT SUMMER 2012
PHenomenal Lives
Caregiver Mentor Spotlight: Jim Wilson
PH
Email Mentors are patients and caregivers
from all over the world, standing by to help
patients, caregivers and parents through oneon-one, email-based support. Jim Wilson is one
of those mentors, and he shares a little about
himself now.
How long has your family been living with PH?
Our involvement with PH started when
my wife Debbie was diagnosed in late 1997.
Like many who have received this diagnosis,
we didn’t know anything about PH. Debbie had taken FenPhen diet pills in 1995 but discontinued them when she
started feeling run down. She was misdiagnosed for several
years until a cardiologist gave us the definitive diagnosis
of primary pulmonary hypertension in November 1997. We
both remember the physician telling us, “I can’t treat what
you have, but what I can tell you is survivability is less than
18 months.” We were referred to a pulmonology group in
December 1997. They ran some additional tests and told
us to come back after the holidays. We went back with high
hopes that they would have answers. This pulmonology group
told us that they didn’t know enough about PH to treat her
and referred us to a hospital that did lung transplants. The
transplant team started my wife on a program designed for PH
to see if she could qualify for a transplant.
The transplant physician had done a fellowship with Dr.
David Badesch, and he told us that Debbie might be able to
take this relatively new drug called Flolan® that was considered
a bridge to transplant. Flolan® stabilized Debbie and she’s still
around today. In the meantime, we started learning everything
we could about PH. We have now been fighting this battle for
14 years, and Debbie has recently transitioned to Veletri®.
My 26-year career as a hospital administrator in the
Air Force helped us immensely in navigating the maze of
hospitals, insurance issues and physician-speak that can
overwhelm anyone diagnosed with a chronic, incurable
disease. The other great resource that has helped us is PHA.
Our first PHA International PH Conference was in 1998 in
Grapevine, Texas. This past Conference in Orlando was our
seventh. We always learn something new and come away with
a renewed sense of hope that a cure is within reach.
At the first Conference we attended, I went to the
scientific sessions and the sessions for male caregivers to
help me understand this disease and my role
as a caregiver. I got involved in fundraising by
organizing several golf tournaments in the Dallas
area and eventually drafted the first guidelines for
PHA fundraising events. I served a term on PHA’s
Board of Trustees and am currently a member of
PHA’s Investment Committee.
As my wife and I grew with this disease,
our focus changed from the types of Conference
sessions we attended to the sessions we
led or co-chaired. I was fortunate to co-chair the male
caregiver session at the 2006 Houston Conference and the
experience only furthered my desire to help others cope with
the difficulties of living with this disease. I’ve also had the
pleasure of being on panels that discussed traveling with PH,
talking with your physician and fundraising.
What advice do you have for other caregivers?
Communicate. Never forget, there are good days and
bad days. Be flexible in how you treat each new day. You have
to be sensitive to how the patient approaches the disease.
Are they going to be upset and angry, or are they going to say,
“I’m going to do what I want to do”? My wife stays as active
as her health will let her. As her caregiver, I know when she
has done too much and I will encourage her to slow down.
Take care of yourself. You both have the disease.
There’s stress 24 hours a day in this caregiver role, so you
have to have time to de-stress — and not just when you’re
sleeping. It’s important to have “me time.” It makes it much
more enjoyable if the patient insists on it, too, and they see
the value in it for you.
What does being a PH Email Mentor mean to you?
I have to fight this disease. Mentoring is another way I
can say, “I am fighting this thing.” I became a mentor because
I want to help people who are going through what I’ve gone
through. I want people to start living with a sense of hope, not
a sense of dread. My goal is to help caregivers who may be
feeling forlorn and overwhelmed to develop a sense of hope. w
Email Jim at [email protected] or connect with another
PH Email Mentor by gender, age, associated disease or other
topic of interest at PHA’s website:
www.PHAssociation.org/Mentors
PATHLIGHT SUMMER 2012 Patient-to-Patient Support Line: 1-800-748-7274
3
Breath of Fresh Air
PHENOMENAL LIVES
PH and 9 to 5: A Personal Journey
4
“H
aving to quit my job would
be the worst thing that could
happen to me,” I thought as I
lay on the table, an allergist pricking
me with rows of potential irritants.
At 22, I was working 70 hours a
week as a pastry chef when I began
experiencing difficulty breathing. I was
tested for what I thought were allergies
to flour and eggs, but I later learned
that it was something much more complex. At that time,
I couldn’t imagine that nine months later I would be
so sick that I would pass out and turn blue only three
minutes into a stress echo test, which finally enabled
my doctor to diagnose me with severe pulmonary
hypertension. A PH specialist sat me down and told me
that if I wanted to live more than a couple of months,
IV Flolan® was my only option. The funny part was that
through each test and all the uncertainty, my career
remained my highest priority.
The hardest part about being diagnosed with
pulmonary hypertension is that people tell you that you
can live a “normal life,” but it’s never the normal life that
you had before being diagnosed. After diagnosis, I tried
to keep working in kitchens, restaurants, anything that
was slightly related to my career. It was what I loved,
and honestly, I didn’t have experience doing anything
else. Finally, after yet another hospital stay, I realized
what I was doing wasn’t helping my health and I needed
to make a change. I felt that without my career, I had
nothing.
With no other foreseeable options, I went to a
temp agency to see about some office work. I had never
worked an office job in my life, but I needed income
because the medical bills were piling up and COBRA
insurance isn’t cheap. Back then we didn’t have the
protection of pre-existing conditions, which means if my
insurance lapsed, I would be uninsurable, so a lapse in
insurance wasn’t an option. The office environment was
very different from my pastry background — conference
calls, button-up shirts, lunch breaks. The whole thing
was a strange experience, but my health was improving.
I was placed as a receptionist with a small engineering
firm that agreed to hire me. I had insurance! Things were
finally looking up.
Less than a year after I was hired at the
engineering firm, I was off the phones and given the
opportunity to do design work; this was
thanks to a co-worker who took the time
to teach me drafting techniques. Now I
manage the majority of the projects in the
office, attend meetings and even travel.
If you had asked me seven years ago if
this is where I would end up, I would’ve
laughed at you, but if I had stayed where I
was, it would’ve literally killed me.
There’s a delicate balance to
managing PH and working that has to happen on a daily
basis. I try not to work too much overtime, and when
I travel, I rest up afterwards. My office lets me take
off whenever I need for doctor’s appointments. They
understand that I am not able to do things like lift heavy
items or climb rickety ladders up two stories to the roof
tops. My co-workers know about my PH, but my clients
don’t.
I chose not to tell my company about my PH until I
started Ventavis®. The job I had been working at when I
was diagnosed had “let me go” for using two sick days
when I was in the hospital to start Flolan®. Ventavis®
requires me to administer daily treatments, and we work
in such a small office that I had no privacy, so I had
to explain to my co-workers what was going on. I am
fortunate that everyone in my office is so understanding
(even though there are lots of jokes), and I know other
patients aren’t so lucky. In another setting, I probably
would not disclose details about my PH with the full
office. Remember, our employment rights are covered by
the Americans with Disabilities Act, so if you do feel you
are being discriminated against, you can file a complaint
with the Equal Employment Opportunity Commission.
In my experience, it’s not easy to work with PH
and not all of us are healthy enough to do it. We don’t
always have an option of whether we work either. What’s
important is managing your energy and time and having a
job that’s realistic about how healthy you are. It’s about
finding that “new normal” and making the best of it. w
By Brittany Riggins
PH Patient
"A Breath of Fresh Air" is a section devoted
to young adult issues. To learn more about
Generation Hope, PHA's group for patients
in their late teens, 20s and 30s, visit www.PHAssociation.org/Patients/
YoungAdults
international
news
International Faces of PH: Ingrid Rivera
“
PHENOMENAL LIVES
M
y name is Ingrid Rivera, and I
hemorrhage caused by the warfarin I
was born on August 13, 1979.
was taking. One day after the surgery,
I am 32 years old and was
a blood clot went into my lungs.
diagnosed with PPH in 2003. I live in
You might ask, how have I
Tegucigalpa, the capital of Honduras.
made it this far? First of all, God
As many of you know, PH doesn’t have
takes care of me. I take my medicine
many visible symptoms. Since I can
daily, and I changed my life habits
remember, I have always loved sports;
one day at a time. I eat healthier
in school I was on the women’s
now. I try to get eight hours of sleep,
football team, volleyball team and
and I try to take everything easy. I
cheerleading squad.
don’t let anger defeat me, I exercise
In 2003, the year I was graduating
every day and I never stop giving
from college, I would wake up every
thanks for each day. I cherish life
I always say if you suffer
morning and run. One day when I
and everything that surrounds it. I
from any type of fatal
started running, I immediately felt my
love the family I have, and I have
disease, there is HOPE! Never
legs go numb and I was out of breath.
become more sensitive to people’s
surrender and never give up
I figured I probably had not stretched
health problems and issues. I always
because we have the best
right, so I tried again. This time, besides
say if you suffer from any type of
doctors looking for a cure.
the numbness and breathlessness, I felt
fatal disease, there is HOPE! Never
dizzy and almost passed out. I visited
surrender and never give up because
the doctor because every step I took to the second floor
we have the best doctors looking for a cure.
of my parents’ house would trigger my symptoms.
I’ve been married for four years now to the greatest
At my first visit, the doctor said it was just stress
and most supportive husband one can have. I love my life,
since I was in the middle of presenting my college thesis.
my parents, my brother, my sister and the 13 dogs my
A week went by, and I went running again and experienced family has. I also find comfort in religion. It is all a matter
all the same symptoms. I went back to the doctor,
of attitude. I currently take calcium channel blockers
and he sent me for an echocardiogram. He later said,
(diltiazem), Viagra® (sildenafil) and Coumadin® (warfarin).
I take the first two medications four times a day and
“You have a very rare disease called primary pulmonary
hypertension.” After many lab exams he concluded my PH
Coumadin® just once a day. I have regular checkups and
live an almost normal life. It’s not 100 percent normal but
was primary because he could not find what caused it.
This was all so new to me, and my family could not
at least I feel like it is, and that is what matters.
believe it. We did research, and everything I read was very
Take it from me, live your life to the fullest and
scary. I visited many doctors after that, who all said it was remember that a cure is just around the corner. Good
hopeless, until I went to Duke University Hospital.
fortune to all of you out there! You have a friend in me. w
From that day on, my life changed completely. We
took everything step by step and I experienced several
By Ingrid Rivera, PH Patient
relapses. In 2004 I underwent surgery for an internal
”
Welcome, Danielle Clifford, Administrative Assistant!
As PHA’s Administrative Assistant, Danielle is the first point of contact for PHA
members, families, caregivers and medical professionals. In addition to various
administrative functions, Danielle supports the work of the Volunteer Services
Department, the Meetings & Conference Planning Department and the Office of the
President. She can be reached by email at [email protected] or by phone
at 301-565-3004 x746. w
5
PH Plus: Life with Associate PH
PHENOMENAL LIVES
PH and HHT: A C are gi ve r ’s St o r y
M
y husband Allan and I consider ourselves very
Everyone moved into “crisis-caretaker” mode,
responsible adults and have often been accused of making calls to a specialist who treated HHT and PH,
being overprotective. The term “caregiver” always
getting our niece quickly transported 500 miles to the
felt right and natural. Family is the most important
Augusta, Ga., HHT Center of Excellence where she
element in our lives, and we care deeply for each and
was diagnosed with Class 4 PH, right heart failure, and
every family member. Nowhere was this more obvious
water retention at a critical level. She spent weeks in
than in our dedication to protecting our children,
the hospital being stabilized. While there, she tested
grandchildren, nieces and nephews and their children
positive for HHT. There was no need to continue talking
from the problems associated with
about HHT testing. The cousins all got
hereditary hemorrhagic telangiectasia
tested, and no one else was positive.
Being natural caregivers,
(HHT). HHT is a genetic disease
We couldn’t be with our niece, who
we
figured
out
what
we
that can cause death or other tragic
lives 1,200 miles away. We called her
could do locally so no one
outcomes if not diagnosed and treated.
every day, and she sounded so weak
Although we were aware of the
when she said, “I don’t want to die; my
would ever have to go
genetic disease in my husband’s family,
little girl needs her mother.” We didn’t
through this again.
we did not know about DNA testing, the
know what to do beyond providing a longneed to screen for organ involvement,
distance shoulder to lean on, but we
or the connection between HHT and PH. What we knew
figured out what we could do locally so no one would
about were nosebleeds, possible blood transfusions
ever have to go through this again.
and the need to get “checked out” before becoming
We started a support group in Philadelphia.
pregnant. Ever-vigilant, we made sure our daughter had
We spread awareness on the Internet, on Facebook
a pulmonary evaluation before her wedding date.
groups, to doctors and to the media; we talked about
When we learned about DNA testing, my husband,
the potential consequences of not being diagnosed.
our children and grandchildren were all tested. We
We talked about our niece and how untreated HHT and
learned who did and did not have HHT. We read
subsequent PH had changed so many lives. We talked
everything we could find on the HHT Foundation’s
about how her parents and husband shared caregiving
website. We became committed to increasing
roles as they adjusted to changes: trips to the hospital,
awareness of this “silent killer.” We urged our nieces
daily preparation of Flolan®, preparing a PH-friendly diet.
All this as our niece faced challenges like showering
and nephews to get tested, mostly because they were
starting their own families. They refused. It became a
with a Hickman catheter, taking medical leave from work
rather uncomfortable topic at family get-togethers. My
and trying to spend meaningful time with her husband
oldest son wrote a letter to his cousins, citing some
and daughter.
tragic cases of children dying or having strokes or other
Three years have passed. Our neice is doing well.
complications due to not knowing about HHT until it was The current medications are keeping her PH symptoms
too late. I thought it was a bold and courageous move
under control, but the HHT-related nosebleeds are still
on his part to risk alienating his cousins but one that
a problem, in part because some of the necessary PH
was necessary.
meds affect bleeding. We increased our involvement
In November 2008, shortly after he sent his letter
with the HHT Foundation, reaching out to give care and
to three cousins, we got a call that one of them, our
support to people all over the world. We feel that we are
niece in Florida, was very ill. We had assumed she had
making a difference, and you can, too.
HHT because she had frequent severe nosebleeds, but
For more information about PH and HHT, visit
recently she had been having some breathing problems
www.PHAssociation.org/Patients/HHT. For more
and was diagnosed with exercise-induced asthma.
information about HHT, visit www.hht.org w
Unaware of the possible connection between HHT and
By Gwen Olitsky, MS
“breathing problems,” we were shocked to learn that a
pulmonologist had just diagnosed her with PH; she could PH and HHT Caregiver
be dying.
“
”
6
The Pulmonary Hypertension Association Quick Resource Guide
Got questions? Get answers.
About PH: An Online Guide – Learn the basics about PH, diagnosis and
treatment. www.PHAssociation.org/Patients/AboutPH
Find a PH Specialist – Look here for a list of PH-treating physicians from
around the world. www.PHAssociation.org/Patients/FindaDoctor
Pulmonary Hypertension: A Patient’s Survival Guide –
Our comprehensive guide to understanding and coping with PH. Order
your copy online at www.PHAssociation.org/SurvivalGuide
NEW! Coping with Pulmonary Hypertension Guides – Find resources to
help patients and family members understand the non-medical impacts
of PH and learn coping mechanisms. www.PHAssociation.org/Coping
Empowered Patient Online Toolkit – Find templates, checklists and tips
to help you coordinate your healthcare.
www.PHAssociation.org/OnlineToolkit
PHA Classroom – A place to participate in live e-learning events or watch
recordings on your own time. www.PHAssociation.org/Classroom
Insurance Guide – PHA’s insurance guide answers questions about
coverage and benefits, including disability, Medicare, Medicaid, Social
Security and unemployment. www.PHAssociation.org/Patients/Insurance
Visit PHA’s caregiver resources at www.PHAssociation.org/Caregivers
Habla español? www.PHAssociation.org/Espanol
Stay in the loop.
PHANews – This free biweekly email newsletter brings the latest news
about PH and PHA to your inbox. www.PHAssociation.org/PHANews
Pathlight – PHA’s quarterly print newsletter for members and donors
provides medical updates, tips on living with PH, support group news and
much more. Visit www.PHAssociation.org/Pathlight for back issues.
Looking to help? We’re looking for you.
Connect from home.
Phone Support
The Patient-to-Patient Support Line is
answered by trained volunteer patients who
are there for anyone who needs to talk about
pulmonary hypertension. 800-748-7274
PHA offers monthly Telephone Support Groups
for both patients and caregivers. Learn more
at www.PHAssociation.org/TelephoneSupport
Online
Our discussion boards, email groups and
chats help you instantly connect with other
patients and family members. www.PHAssociation.org/ConnectOnline
Find a patient or caregiver email mentor at
www.PHAssociation.org/Mentors
Connect face-to-face.
Support Groups
Join one of our 240+ support groups
nationwide to connect with people who
understand what it’s like to live with PH. Find
support groups in your area at www.PHAssociation.org/LocalSupportGroups
Education Programs
PHA hosts regional patient and family
education conferences throughout the year.
Coming this fall! PHA will visit:
New Brunswick, N.J. (Sept. 8)
Chicago, Ill., area (Oct. 13)
Learn more at
www.PHAssociation.org/OntheRoad
The 435 Campaign – Reach out to Members of Congress to advocate for
PH research and education. Request information and sample letters at
www.PHAssociation.org/Advocacy
Special Events and More!
Attend an event near you to meet patients and
support PHA: www.PHAssociation.org/Events
Our Journeys – Submit your story online to inspire others and help raise
PH awareness. www.PHAssociation.org/OurJourneys
Join our community of hope.
PHAware Campaign – Contact your local media outlets to spread the
word about PH! PHA provides a step-by-step Media Guide, press kits and
an email group to help you connect with other media advocates.
www.PHAssociation.org/PHAware
PATHLIGHT
SUMMER 2012 Become a member to receive Pathlight,
a discount on Pulmonary Hypertension: A
Patient’s Survival Guide and much more.
Visit www.PHAssociation.org/Join
Patient-to-Patient Support Line: 1-800-748-7274
Conversations in Caregiving
PHENOMENAL LIVES
We All Need Support Sometimes: Caregivers Share Tips for Caregetting
A
wallet that lists all his medications in case he is ever alone
s a caregiver, it can be easy to fall into the trap of
and has an emergency and needs help from the EMTs,”
feeling like you need to do it all. After all, your loved
Diane told us. “I can give him the gift of caregiving, but I
one is looking to you to help them manage a chronic
also want him to be able to take care of himself.”
disease and, depending on the severity of your loved one’s
Make a space for yourself. “I’ve been seeing a
health challenges, their care may involve significant time
therapist since my partner got diagnosed, to help me cope
and activity. Caregivers may become completely focused
with our ‘new normal,’” says Cynthia. “I feel
on being caregivers, and rarely or never on
that talking to a therapist is a way of standing
being caregetters.
Caregivers may
up for myself. It helps me to cope with my
Finding and accepting support can be
become completely
partner’s expectations and to work on also
difficult. You may feel uncomfortable trusting
focused on being
taking care of myself.”
another person to be responsible for your
caregivers, and rarely
The small stuff counts. Sometimes, just
loved one’s care, feel obligated or expected
or
never
caregetters.
having someone acknowledge your efforts as a
to be available 24/7, or simply be used to
caregiver can help. “Personally, I love it when
being the go-to person. But help can take
someone comes in the house and just asks me how I am,”
some of the weight off your shoulders, give you some time
says Diane. Nancy agrees, “It means the world to me to
to refresh your mental, emotional and physical reserves,
and ultimately enhance your relationships with both yourself have someone actually ask me ‘how are you doing?’ To
know that someone is concerned for you is huge.” You can
and your loved one.
reinforce this by thanking the people who take the time to
We spoke to caregivers in a variety of situations to
ask how you are. If you’re feeling forgotten, call a friend or
hear their thoughts on finding caregiving support. Here is
family member who you’re close to and let them know that
what we learned:
you need someone to lean on or talk to for half an hour from
People want to help, but they might not know how.
time to time. Don’t be ashamed to ask for support.
Cynthia shares, “I learned about a website called Prioritize. “Rethink your family budget in terms of how
www.lotsahelpinghands.com. It’s a calendar where people
much you ‘spend’ when doing chores. If your time is more
can sign up to provide help for patients and caregivers
valuable (per hour) than what you’d pay someone to clean
dealing with a chronic illness. Since my partner was
your house, grocery shop, do yardwork or other chores, try
diagnosed, a lot of people have asked what they can do to
to find room in your monthly budget to pay them and free
help. I ask them to sign up on the site. It allows me to have
up your time for things you cannot pay someone else to
options for different types of help, but I can choose from
do,” suggested a male caregiver who participated in PHA’s
people I know.” If you don’t have Internet access, you can
Family and Friends survey.
make a list of tasks that would be helpful and ask a friend
Joe, another male caregiver, adds, “We now pay two
or relative to coordinate volunteers.
ladies who clean our house, but they are the only people
Accept help — from your loved one. Remember that
who I pay. It’s also good therapy for my wife to talk to them,
before PH, your loved one was probably used to giving
and they have become another support system.”
as well as receiving support. The loss of this role can be
If needed, provide training. Look for others who can
difficult for patients — and sometimes unnecessary. One
patient told us, “Sometimes I think my wife believes PH has help you with medical tasks such as mixing medications.
affected my brain … actually, my brain is the healthiest part “I would like to know if there could be training for in-home
care. It’s very scary to know that I am the only one who
of me now, and I really want to be asked to use it.” While
knows how to handle my mom’s condition,” says Nancy.
you may not be comfortable talking to your loved one about
Many specialty pharmacies will send a nurse out to train
the frustrations you may feel about your role as a caregiver,
caregivers at home; if you have friends or family willing to
don’t forget that they still want to be there for you in any
help you with your loved one’s medication, see if you can
capacity they are able to.
schedule a “training date” for them. Similarly, if you have a
Additionally, it’s important that your loved one be
local support group, see if a specialty pharmacy nurse can
prepared if the unexpected happens. “I have created a
run a training session for the group and bring your “caregiver
complete step-by-step direction pamphlet that I leave in my
volunteers” to the session so they can learn with you.
husband’s medication supply kit. He also has a card in his
“
”
story continued on next page
8
story continued from previous page
“Help: A Collection of Essays by
Those Who Care”
T
his thin, yet inspirational and powerful book is made
up of stories by caregivers who belong to and blog
about their experiences on www.caregiving.com. The
caregivers who have contributed to this book face a variety
of circumstances. They include Laura, whose husband is
paralyzed after a road rage motorcycle accident; Bette, who
is married with three children and cares for her mother who
has dementia; Trish, who cares for her epileptic brother;
and several more, including my own piece about the first
year of my daughter’s diagnosis with PAH.
These caregivers may care for parents, grandparents,
spouses, siblings or children, but no matter who we care
for, we have the same struggles. Each caregiver in this
book offers their experience, insight and advice for other
caregivers seeking help with their caregiving role.
This book makes a great gift for anybody who is a
caregiver or somebody who knows a caregiver and wants
a glimpse into their world. I would also recommend that
caregivers join www.caregiving.com and participate in the
online events that entertain, encourage and support.
All the proceeds go to www.caregiving.com’s
Caregifters program, which provides $500 for a caregiver
in need. I have been one of the recipients of this award,
which has allowed me to go through an online school to get
a pharmacy technician degree in hopes that I will be able
to use this knowledge to help my daughter. If you would
like to purchase the book, visit www.lulu.com w
as basic as household chores can contribute to your
emotional well-being and sense of communal support. “I’m
lucky because my family volunteered; their help freed up
my time to do other things,” shares Joe. “It gave me time
to go fishing and take time for myself. Because of them, I
never feel alone or like I’m stuck.”
Have other tips or questions? Join the conversation
on PHA’s Caregiver email group: www.PHAssociation.org/
EmailGroups w
By Michal Rachlin, PHA Kerry Bardorf Family Support Program
Associate
Special thanks to each caregiver who contributed to this
story. Thanks as well to Allyson Rupp, LCSW, of the Vera Moulton
Wall Center for Pulmonary Vascular Disease at Stanford Hospital
and Clinics, for input on support opportunities. For more tips, visit
www.PHAssociation.org/Caregivers/Coping
PHENOMENAL LIVES
Reach out if you don’t have local support. Cynthia
told us, “Initially, the isolation, I think, was the hardest
thing. Then my partner and I found a support group in
the Boston area.” Cynthia advises, “Keep your social
connections open; just because someone in your life has
a chronic illness doesn’t mean you have to close off your
social life.”
Long-distance support counts, too. “My out-of-town
family sends me gift cards to restaurants to help me with
meals,” says Joe. “Other members of my family bought
Dream Dinners services for me. You order your meals and
they send them to you with an instruction card. When the
meals arrived, my family got together like a party and put
the meals together.”
The benefits of caregiving support are as many and
varied as the types of support. Getting help with something
C aregiver S hout -O ut !
This Shout-Out from PH patient Jen Cueva
goes to her husband and caregiver Manny.
M
anny is my rock; we have
been married for almost
20 years now. I would
have never thought that I would
be the sick one. I was a nurse
prior to getting PH.
Since getting this PH
diagnosis, and during the time
trying to get a true diagnosis,
Manny has stood by my side.
He has always offered me unconditional love. As he
says, our vows say, “in sickness and in health.” Since
2005 he has had to take on a whole lot more around
the house. He works full time but also has to do house
chores and cook and take care of me.
I know PH has changed our lives greatly, but he
never gives up on me and always stands beside me
when everyone else leaves. I do not think I would ever
have made it this far without him. I love him and want
him to know how much I truly appreciate all that he
does. I know it is not easy dealing with the ups and
downs of PH! I am blessed to have such a wonderful,
loving man! w
For a chance to express gratitude to a loved one
in Pathlight, submit your own Shout-Out at www.PHAssociation.org/Shout-Out
By Jane Northrop, PH Caregiver
9
PHENOMENAL LIVES
Read All About It: Survival Guide Fifth Edition Now Available
10
T
he brand new fifth edition of
Pulmonary Hypertension: A Patient’s
Survival Guide is hot off the presses!
Called the Survival Guide for short, this
book serves as a soup-to-nuts resource
covering many of the questions patients
and their loved ones might have about
living with pulmonary hypertension.
The new edition includes updates
to these chapters:
options on the horizon.
The book also covers weighty topics
like life expectancy, the risks of different
treatments, and how PH can sometimes
be inherited. There is a dedicated chapter
for caregivers, as well as an ever-useful
glossary of PH terms.
Gail Boyer Hayes, the original creator
and author of the Survival Guide, wanted to
have a resource fellow PH patients could
easily grasp. First published in 1998, it
• “PH Drugs”
was the first book of its kind on PH, a
• “Children and PH: Babies, Kids,
comprehensive and easy-to-understand
Fifth Edition Cover
Teens and Family Planning”
resource amidst the complicated medical
• “What to Eat When You Have PH”
texts that were available at the time.
• “Dealing with Emergencies, Doctors, Colds and
Updates to the Survival Guide happen annually
Flu”
under the guidance of medical editor Dr. Ron Oudiz, as
• “You’re Not the Only One with the Blues”
well as by the many medical professionals and patient
• “The Active Life: Working, Exercising, Traveling
volunteers.
and Living”
To order your copy, visit www.PHAssociation.org/
• “Insurance and Legal Matters”
OrderSurvivalGuide or call 301-565-3004.
• “Resources”
Thank you to all the patients and medical
The “PH Drugs” chapter has been revamped and
professionals who assisted with the publication of the
separated into three, easier-to-swallow chapters: “PH
fifth edition of the Survival Guide! w
Drugs: Prostanoids” and “Other PH Drugs” provide
details about current drugs that treat PAH, while “More
By Ellie Falaris Ganelin
on PH Drugs” covers related topics like participation in
Design & Publications Associate
clinical trials, combination therapies and new treatment
Pulmonary Rehab, PH & Insurance: Don’t Take No for an Answer
been resolved in 10 months.
The president forwarded my letter
to the director of patient financial
services, who told his personal assistant
to take care of the problem. She called
me, verified that she understood the
issues, and I provided her with some
additional information in the form of
EOBs (Explanation of Benefits). She took
care of the billing problems for me. She
also told me that it is true that Medicare plans do not
cover Phase III pulmonary rehab for conditions such as
COPD. However, she said that many of them do cover
Phase III pulmonary rehab for pulmonary hypertension.
Pulmonary hypertension is so rare that most rehab
programs don’t see even one patient.
With my previous coverage, I did not have to pay
anything out of pocket for pulmonary rehab. It wasn’t
until the first couple of months this year that I had
to pay co-insurance until my maximum out-of-pocket
expenses were met.
Bills from providers are one of my pet peeves
because I think they are intentionally misleading and
vague. The providers are betting on people getting their
bills and thinking the amount must be right without
verifying what they are paying for. My bills for pulmonary
rehab provide the first date of service and no others,
even though they cover three to six months of service.
One deputy director told me my claims were denied
on a particular date (based on entries in their database).
I asked him to send me a copy, which he promised to
do. He called back to apologize because on the date in
question, they had not even submitted a claim.
I figure I’m not so special. If this has happened
to me, then it has happened to others too. How many
PH patients are missing out on the proven benefits of
pulmonary rehab because their providers tell them it
isn’t covered by insurance and they have to pay $60 –
70 a month?
If you have to fight for insurance rights, don’t give
up. Sometimes it is hard. Representatives from the
provider told me several times that my insurance denied
payment, but I kept fighting, and I kept calling, and I
finally got the situation worked out. w
PHENOMENAL LIVES
I
nsurance issues can be really
frustrating for pulmonary hypertension
patients, but as I have learned, when
it comes to getting the answers you
need, don’t accept no for an answer
from someone who doesn’t have the
authority to say yes.
Four years ago I started on
pulmonary rehabilitation for pulmonary
hypertension, and I have been going
ever since. It is important that the rehab was specifically
for PH. At the time, I was on COBRA and my insurance
covered the initial rehab. I don’t recall the standard
number of “Phase II” visits that were allowed, but at
the end of the initial period, I was told by the rehab
staff that insurance did not cover Phase III. I requested
they submit the claim as a courtesy and they did. My
insurance covered it with no questions asked.
Then there was a change in the COBRA carrier.
With the new insurance, I again requested they submit
the claim, and pulmonary rehab Phase III was again
covered with no questions asked.
When I became covered by Medicare through a
Medicare Advantage plan, I was told by everybody —
rehab staff, customer service, billing and insurance
departments with the provider — that Medicare plans do
not cover Phase III pulmonary rehab. I had to fight to get
them even to submit the claims. Eventually they did. The
claims were denied because of lack of required codes.
Instead of supplying the codes, the provider chose to
bill me in violation of their agreement with the insurance
carrier. Eventually, they did supply the codes, and my
carrier covered Phase III pulmonary rehab.
Since then, I have had a change in my Medicare
Advantage Plan. I had to go through the whole process
and arguments again, but eventually the provider
submitted the claims. And again, the claims lacked
the proper codes. After many calls on my part, all the
required information was submitted, and again, the
carrier covered Phase III pulmonary rehab.
Next, to my dismay, the provider instituted a policy
of changing account numbers every four to six months,
and it looked like I was going to have to go through the
whole process two to three times a year. For 2011, I
started trying to get claims submitted properly in March.
Finally, in January 2012, I wrote to the president of the
hospital and told him very clearly the issues I was facing
and asked if he felt it was appropriate that they had not
By Doug Taylor
PH Patient
11
PHENOMENAL LIVES
Our Journeys
Our Journeys are stories that bring the PH community together and shine as beacons of hope for
those who feel isolated and alone with this disease. Read more stories, submit your own or watch
Video Journeys by visiting www.PHAssociation.org/OurJourneys.
Marla Akins, Temple Terrace, Fla.
A
ugust 2008 was a great
month. I was running
nearly 40 miles a week.
Next marathon on the notch
was to be Gasparilla in
Tampa, Fla., my home city,
for the second time. Over
the next month of training,
my running got much slower,
and I had to stop for frequent
walk breaks. I could tell there
was something wrong with
my breathing but didn’t think
anything of it.
In October, I couldn’t even run to the end of my
street without stopping. I finally called the doctor. After
a brief visit with my primary care provider, I asked for
a referral to the pulmonologist. I picked a name out of
a hat. I had no idea who to see; all I knew was that I
wanted to be seen fast so that my running could get
back on track. After calling around, I found one who
could see me the very next week. He said that my
symptoms sounded like exercise-induced asthma, so
he prescribed two inhalers and we made a follow-up
appointment in two weeks.
After the first week I felt no relief, so I called the
doctor and he recommended I inhale more often while
running. That did not help, which I informed him at
the second visit. He told me to get a chest x-ray and
referred me to his cardiologist friend down the street.
My follow-up appointment with the pulmonologist was
the day before Thanksgiving. I had an echocardiogram
done by the cardiologist. We needed to get out of there
fast because my entire family would be arriving in just
12 short hours. I brought my husband and 6-year-old
daughter. Why did I bring them? Thinking back, I have
no idea what initially made me want to bring them.
Remember, I thought I only had exercise-induced
asthma.
The doctor came into the room and told me I had
pulmonary hypertension. I had no idea what that was
and just sat there. I may have even started laughing
at that point. To tell you the truth,
everything went numb as soon as
he said, “Marla, this is serious
business. Your life expectancy is
three to five years, and you need a
lung transplant.”
All I heard was that was it for
me. I was a 37-year-old woman with
a husband and 6-year-old daughter.
Who would take care of my
daughter? Who would drive her to
school? Who would buy her clothes
and watch her get married? We left.
What else was there to do at that point? Of course, we
called our families and told them the news. Everybody
was shocked and in deep sorrow. Imagine how our
Thanksgiving was.
On Thanksgiving Day, my father told me about a
pulmonologist who specialized in PH. My cousin Scott
recommended him to us. Without that recommendation,
who knows what kind of care I would have received.
He gave my number to Dr. James Gossage at the
Medical College of Georgia in the Georgia Health
Sciences University. Three weeks later, in the middle of
December, we were in Augusta, Ga. The initial diagnosis
was confirmed, but there was no life expectancy given
this time. I was started on sildenafil at 20mg, three
times per day.
After a couple months, I was passing out while
walking at work, so I needed something stronger. I
had also gained 25 pounds. My cardiologist in Tampa
never said a word about it and told me to stop eating
so much. When I got back to Georgia in February 2009,
I was in right-heart failure and in critical need. My
pulmonary pressures were in the 100s and Dr. Gossage
immediately admitted me into the hospital and started
epoprostenol within 24 hours. At that time I also started
bosentan. After two weeks in the hospital, I was finally
ready to go home and be a mommy again. Oh yeah,
and did I mention I work full time as a speech language
pathologist? The truth was, it was tough. I was crying
every day because I was afraid I was going to die. It’s
story continued on next page
12
Our Journeys
story continued from previous page
great. I exercise five times a week; I take my daughter to
amusement parks, the beach, roller skating and bowling,
and I work full time.
I also attended PHA’s International PH Conference
and Scientific Sessions in California in 2010, where I got
the nerve to start running again. It is a very slow process,
but I feel awesome. I attribute my mental and medical
success to my very supportive family, the support of the
PH support groups, and my awesome pulmonologist Dr.
James Gossage. I couldn’t have gotten to where I am
today without their help.
If you live in the Tampa Bay area in Florida, please
attend our newly started support group. We would love to
have you. (www.PHAssociation.org/FindASupportGroup) w
PHENOMENAL LIVES
just hard to get past that.
I started seeing a therapist and walking for exercise.
I started attending support groups through PHA. I attended
two groups, one in Sarasota and one in Lakeland, Fla. I
went back to work. My mood started to get better and was
becoming somewhat normal again. In September 2009
after seven months on epoprostenol, I had a right heart
catheterization. My pulmonary pressures had gone back to
normal. Me? Normal? “Maybe only from the neck down,”
Dr. Gossage would say.
In October, my doctor and I began weaning me
off the pump. In December, I started on treprostinil, an
inhaled medication. Since February 2010, I have been on
the inhaled medication ambrisentan and sildenafil. I feel
Haley Lynn, Amarillo, Texas
A
t 17 years old, I had had enough of not being able to breathe. I
could never keep up at school with friends or even my parents.
Walking up the stairs was impossible and just walking anywhere
caused me to completely lose my breath. This had been going on since
I was 11 years old. And it seemed like no one was listening. “I can’t
breathe” was just something commonly ignored when it came out of my
mouth. I had quit competitive dancing, and I had never participated in
any sport at school.
Every doctor I went to was at a loss for words and would simply
say, “It’s asthma.” Being a senior in high school, I was finished with
this game. My father began to see how serious I was when I couldn’t
walk from the parking lot of Wal-Mart into the store without passing
out. Finally, two months after my high school graduation, I had an
appointment with a cardiologist.
Electrocardiograms, oxygen saturation tests and tons of questions
later, my doctor finally entered my room. He shook his head and
said, “Something is very wrong with you.” All I could do was smile.
That sounds weird, but I was so ready to know what was wrong with
my body. After listening to my heart, my doctor diagnosed me with
atrial septal defect (ASD). I was scheduled to have a right-heart
catheterization to look at the hole that they thought was in my heart. In
surgery, they found no hole and instead my diagnosis was pulmonary
hypertension.
It’s a little over a year later and I have made a great recovery
thanks to my pulmonologist, cardiologist and specialist. I was put on
two vasodilators and Coumadin®. I couldn’t have been more excited to
be diagnosed; even though I will be dealing with this disease my whole
life, I can truly say I am content. The hospitals, needles, medicines
and doctors get old sometimes, but I am blessed to finally have the
knowledge that I am not a normal 19-year-old, nor do I have to try to
keep up like one either. I am simply PHenomenal. w
PATHLIGHT SUMMER 2012 “
The hospitals, needles,
medicines and doctors
get old sometimes, but I
am blessed to finally have
the knowledge that I am
not a normal 19-year-old
nor do I have to try and
keep up like one either. I
am simply PHenomenal.
”
13
Health Matters
A s k a P H Sp e c i a l i s t : P l a n e s , T r a i n s a n d A u t o m o b i l e s w i t h P H
Q:
As a PH patient, what can I do to make traveling easier
for myself?
A:
Traveling can be a stressful time for anyone. However,
travel for people with pulmonary hypertension may be
especially stressful with extra planning needed before a trip.
Issues to consider include medication, blood clots, emergency
contact information, overexertion, need for oxygen and eating
on the road. For many patients who use supplemental oxygen
or who have borderline low oxygen levels, method of travel will
play a major role.
Oxygen: Travel to higher altitudes may present a specific
challenge due to lower oxygen levels in the air. When traveling
on the road by car, train or bus at higher elevations, increased
levels of supplemental oxygen may be necessary, especially
when above 4,000 – 5,000 ft. Symptoms to look for include
fatigue, more shortness of breath at rest or with activity, rapid
breathing, lightheadedness, rapid heartbeats and headaches.
On the road, the change in elevation may be gradual and
not noticeable until you get out and move around. However,
the change occurs rapidly if traveling by plane. Fortunately,
passenger airplanes pump compressed air into their cabins
when traveling above 10,000 ft. But oxygen levels are 25
percent lower in pressurized cabins compared to sea level.
People who use oxygen only at night or one to two liters with
activity typically do well without the need for oxygen during the
flight. However, people who use two liters at rest or three to
four liters with activity will likely need oxygen during air travel.
In some medical clinics, one can perform an “altitude
test” using a special pressurized chamber to test oxygen
levels at different altitudes to determine whether oxygen will
be needed. The test, however, is not routinely needed prior
to travel. Certain portable oxygen concentrators (POC) can be
used in-flight but must be approved by the airline ahead of
time. Empty oxygen tanks and POC can also be checked as
luggage.
Recommendations for traveling with oxygen:
1. Ask your doctor if you need oxygen while traveling. Ask
for a “medical certificate” that states why you need
oxygen (i.e., why it is medically necessary) and the “flow
rate per minute” that you need (allowable range = 0.5-6
liters/minute). The certificate must also state the oxygen
user is physically and cognitively able to use it and
14
respond to warnings/alarms.
2. When booking your ticket, let the airline know that you
need oxygen in-flight.
3. Federal law requires that oxygen be dispensed only by
the airline. Each airline works with an oxygen provider.
Charges vary. (American Airlines, for instance, charges
$100 per segment for oxygen service. This fee may or
may not be covered by insurance.)
4. Contact the oxygen vendor at your final destination
to arrange for oxygen once you arrive. This is done
separately through a health agency and not through the
airline.
5. If using a POC, check with the airline to ensure it is
approved. Bring enough batteries for 150 percent of the
expected flight duration in case of delays.
Medications/Pumps/Etc.: Certain medications like
epoprostenol (e.g., Flolan®) require pumps, cooled storage
and extra supplies. Carry extra tubing, needles, backup pump
and extra medication. Be prepared in case of delays by having
extra medication packed in your carry-on luggage. If your
medication requires being kept cool, bring six to eight ice
packs and a premixed dose. Anticipate how you could handle
flight delays or cancellations.
Blood Clots: Long periods of inactivity during travel may
raise the risk of developing a blood clot. With air travel, get up
and be active. Consider support stockings for your legs if you
have had a blood clot in the past. If traveling by ground, stop
frequently (at least every two hours) and walk for a couple of
minutes.
Eating on the Road: We eat differently when we travel.
Be aware of eating foods that are high in salt as extra fluid
will be retained. Try to eat lightly with lots of fruits and
vegetables and limit the temptation to eat fast food (high in
salt).
Pre-travel Physical: Talk to your doctor ahead of time
and come up with a plan in case you develop symptoms such
each issue, Pathlight features a question from our PH
community and its answer from a PH specialist. Send us your
questions, keeping in mind doctors can only address general
topics that are not specific to individuals. Send submissions to
PHA at [email protected] or call 301-565-3004 x770.
T a rgeted P ed ia tric R e search i n P H N e e d e d
HEALTH MATTERS
“I
t is believed that in the United States, pulmonary arterial
hypertension (PAH) will affect 40 – 50 pediatric patients
per million children at some point in their lives.” While
research has come incredibly far in the last 15 years or
so, with nine approved PH therapies and many more in the
pipeline, none of these therapies is approved for use in
children.
You may think this is not a problem. We can just treat
children like “small adults,” with smaller medicaton doses,
right?
Unfortunately, the answer is no. Children are not just
“small adults.” I sat down with two leading pediatric PH
specialists to find out more. Thanks to Robyn Barst, MD,
and Dunbar Ivy, MD, for their contributions to this article.
Why is it important to consider pediatric patients
separately from the adult PH population? In short, Dr. Ivy
says that the disease is often different. While there are
some idiopathic PH patients in the pediatric population,
there are also many who have conditions not so commonly
found in adults, such as lung disease of prematurity and
congenital heart disease.
In addition, the metabolism of children is vastly
different from that of adults. And while it stands to reason
that the dosing is therefore different, it doesn’t necessarily
mean just giving an arbitrary “less.” Sometimes children
metabolize drugs more rapidly and need higher doses,
while other times their liver is not well developed and they
should receive less medication. If the metabolic pathway
is not maturely developed, some medications may have
serious consequences. Further, a child’s metabolism
can change throughout childhood, and even for children
who have “normal” metabolism for their age, metabolism
changes from toddlers to adolescents. Therefore, dosing
based on weight can also be affected by age.
Dr. Barst says that when it comes to a treatment like
Flolan®, for instance, it has been found that a higher dose
per body weight is actually more effective than in adult
patients. It took a long time for practitioners to realize this,
but when they tried to cut back on high doses, kids actually
got worse.
While it is true that pediatric patients likely metabolize
medication more quickly (and thus may require more
frequent dosing), in very young infants the metabolism
of medication may in fact be much slower and too much
medication too often can cause organ dysfunction in tiny
bodies.
These dosing questions should not be trial and error,
and clinical trials and pediatric guidelines would help with
Dr. Ivy (far right) treats a young PH patient.
more targeted dosing recommendations.
Dr. Barst says pediatric practitioners are now seeing
that there may be an optimal window of development, a
time when more aggressive treatment may in fact have
a higher impact on outcome, largely due to the growth
and change in the body during childhood. More research
on what that window of development is, and how to best
capitalize on it, is also needed.
What personal traits do kids bring to the table that
makes them different to treat? When it comes to the
basics of administering and tracking treatments, kids bring
their own set of challenges, often in the following areas:
Medication: Often, the delivery of the dose can be
problematic. As of this publication, four PH medications
come in pill form and two are inhaled. Both may be
challenging for small children. As Dr. Ivy explains, a
medication that can be delivered in liquid suspension and
easily swallowed is often important, even ideal, and some
PH medications do not translate well into that form. Three
medications are delivered continuously via IV 24 hours a
day, and this can be very tricky for an active child of any
age. Likewise, keeping oxygen on a child on the move can
be very difficult.
Outcomes: While an adult PH patient with advanced
disease is likely very symptomatic, the same does not
necessarily hold true for the pediatric patient unless they
are very sick. A six-minute walk, the standard evaluation
for PH function and class in adults, does not work as well
with a pediatric patient. It can, in fact, be invalid because
even children with advanced PH may still have good heart
function. Since the six-minute walk is also a primary
endpoint in clinical trials and is often used to gauge how
effective a course of treatment is, different standards need
PATHLIGHT SUMMER 2012 story continued on page 20
15
HEALTH MATTERS
16
Finding Answers to Questions about Lung Transplantation for PH:
Part Two in a Two-Part Series
P
art two in our series examines questions about the
transplant evaluation, the process of being listed for
transplant and what to expect after a transplant.
What is involved in transplant evaluation? After
a patient decides to undergo transplant evaluation, the
patient’s physician contacts a transplant center to arrange
the outpatient evaluation week. This involves several
days of outpatient testing and visits with various doctors
and consultants. While some testing is performed by the
patient’s primary care physician (routine cancer screening
and vaccinations, for example), other testing may be done
during the transplant week (lab testing, radiologic studies,
catheterizations and other cardiac testing). After this is
complete, the center’s committee reviews the data and
makes a recommendation on whether or not the patient
is a candidate. If the patient is not yet sick enough for
transplant, the committee may decide that they could be
a candidate in the future but would not list the patient at
this time. Instead, the center will follow them closely every
three to six months and list when their condition worsens.
The decision of when to list a patient for transplant
is complicated, and we often refer to the “transplant
window.” Listing too soon may potentially shorten a
patient’s life due to the risk of lung transplant itself.
Waiting too long may mean a patient’s heart may not
recover fully with double lung transplant alone, and they
may require heart-lung transplant or even be unable to be
transplanted. Therefore, routine follow-up at the transplant
center, even prior to listing, is essential to determining
when a patient is within the window for listing.
What is involved in listing for transplantation?
When patients meet criteria for transplant, the decision
is made by the transplant team and patient to list
the patient for transplant. Data from their evaluation
week (e.g., age, diagnosis, functional status, oxygen
requirement, pulmonary function testing, right heart
catheterization data, carbon dioxide levels, six-minute
walk distance, serum creatinine) are used to register
them with the United Network for Organ Sharing (UNOS).
This generates a lung allocation score (LAS), which is a
number from 0 to 100 that determines where a patient is
ranked on the list with respect to others. A sicker patient
will have higher LAS, and thus have a higher priority in
obtaining lungs when they become available.
It is known that the formula for calculating the LAS,
which is used in all diagnoses (COPD, IPF, IPAH, etc.)
places IPAH patients at a disadvantage. To address this,
UNOS currently employs an expedited appeals process so
that patients who meet certain criteria will be moved to
the ninetieth percentile on the list. To meet these criteria,
patients must be deteriorating on optimal medical therapy
and have a right atrial pressure greater than 15 mmHg or
a cardiac index less than 1.8 L/min/m2. These factors
are reflective of the stability of the right ventricle, which is
ultimately tied to prognosis in all PAH patients. Due to the
potential for these appeals, it is important for patients to
follow up routinely pre-transplant.
In addition, recent data from the REVEAL study
showed that additional factors, if incorporated into the
LAS calculation, would more accurately predict survival
and thereby better reflect organ prioritization in patients
with IPAH. These additional factors include estimates of
right ventricular function, which as stated earlier, are key
to determining survival in IPAH. The LAS in its current
construct, more heavily weighs factors reflective of
“pure lung dysfunction,” like FEV1 (a measure of airway
capacity) since these predict survival better for patients
with “lung diseases” like COPD. Although IPAH does occur
in the lung and is hence considered a “lung disease,”
these parameters are not useful in predicting survival in
IPAH. This is why it was imperative to have these new
“heart-related” parameters added to the LAS. This is
currently under review by UNOS, and a revised formula
incorporating these changes is now under consideration.
What is life like after transplant? Lung
transplantation involves a complete lifestyle change, and
while patients no longer require PH medications, they
now require a new set of medications that allows their
body to accept the lungs as well as prevents infections.
Careful medical follow-up is crucial to success. Lung
transplantation is an active medical condition that
involves routine labs, pulmonary function testing, and
frequent visits to the transplant center for the rest of
a patient’s life. The transplant medications often have
side effects, and patients frequently require additional
medications to treat new conditions such as high blood
pressure, cholesterol or diabetes. Although transplant
involves active maintenance by each patient, it offers the
possibility of helping patients with severe IPAH live longer
and improve their quality of life. When all goes well and
with close medical follow up, lung transplantation provides
patients the opportunity to physically do activities they
have not been able to do in years.
Meet the doctor
Meet Dr. Roxana Sulica: A Voice of Support for PH Patients
symposia sponsored by PHA, and I try not to
miss any of the international meetings. PHA
has great impact on our activity, and I am
profoundly grateful to the work and enthusiasm
of the organization.
You are active with local support
groups, particularly the NYC Beth Israel
group. What do you find rewarding about this
involvement? I use these meetings to shed
light on medical aspects of the disease, to
provide psychological support and to generally
educate patients about their disease, such
as organizing cooking classes targeted to their pathology
or inviting other healthcare professionals to talk, such as
psychologists and rehabilitation technicians. It is extremely
rewarding to be able to take care of the entire human
being.
You are involved with the 2012 PHA on the Road:
PH Patients and Families Education Forums as committee
co-chair of the New Jersey program. What do you envision
for this program, and what do you hope attendees will
gain from it? We hope to gain awareness and to help to
demystify this field. We also hope to improve relationships
with front-line physicians and facilitate the care of these
patients since I believe this is still an underserved
population.
What is the most important piece of advice you
give your PH patients? My most important advice for the
patients is to seek care in a specialized PH center. We are
all thrilled to work in conjunction with the local and referring
physician, but this is not a common cardiac or pulmonary
disease to be taken lightly. It requires experience,
dedication, expertise — none of these being built overnight.
At a PH center, we are endowed with multiple resources to
facilitate patient care. I’d like to mention the team that is
working with me because I would not be here without them:
Nakia Mitchell, my coordinator of 12 years, and Rebecca
Fenton, my clinical nurse coordinator, both of whom are
devoted to the program to the highest extent possible.
Do you have any advice for new practitioners in the
PH field? You are welcome on board, but there are dues to
be paid: your time, your knowledge and your commitment.
PH has to be treated with deep knowledge, respect and
involvement. w
HEALTH MATTERS
D
r. Roxana Sulica received her medical
degree from the Carol Davila University
of Medicine and Pharmacy in Bucharest,
Romania, and completed her fellowship
in pulmonary critical care and a dedicated
clinical and research fellowship in pulmonary
hypertension at Mount Sinai School of
Medicine in New York, New York.
Dr. Sulica has served on the editorial
board of the journal Advances in Pulmonary
Hypertension, as well as a reviewer for
numerous scientific journals, including Chest,
Critical Care Medicine, Respiratory Medicine and Mount
Sinai Journal of Medicine. She currently serves as principal
investigator in several international, multicenter trials
examining novel treatments for PH.
You specialize in internal medicine. What sparked
your interest in pulmonary hypertension? I am a pulmonary
critical care physician working in the PH field for the past
12 years, and I devote 85-90 percent of my time to PH. My
interest has been sparked by the challenge, the unknown,
the dynamism, the complexity of the field and, most
importantly, by the utmost inner beauty of my patients.
What advances have you seen in the treatment of
PH patients since you started practicing? I started when
Flolan® was the only therapeutic option for PH patients, and
I’ve witnessed and actively participated in the development
of the entire pharmacopeia that we currently have available.
What do you find to be the most encouraging
advances currently taking place in the PH field? I have
always been impressed with the medical community’s
enthusiasm and interest in raising the bar at each turn and
to keep fighting for a cure for PH. We’ve come a long way,
and we’re gladly following the same path to the end.
You’ve been working in the field of PH for a long
time. Do any cases or patients really stand out to you
and why? This question is hard to answer because even
now, after years of experience, each patient still teaches
me a new lesson, and they continue to surprise me with
the intricacies of their disease. Most recently, after using
goal-directed therapy like most experts in the field do, I
started to believe that we are probably using the parenteral
prostacyclins a bit too late, at least in some PH patients.
How did you become involved with PHA? PHA has
always been a wonderful help and mentor to me. I have
been on the editorial board of Advances in Pulmonary
Hypertension, PHA’s medical journal. I have directed CME
Interview conducted by Rebecca Kurikeshu, PHA Medical Outreach
Program Associate
17
News from the network
HEALTH MATTERS
Allied Health Professionals Share Support Group Experiences
I
n addition to their work in clinics and research labs,
many allied health professionals participate in patient
support groups. We spoke with a few of them to hear
why they choose to be involved in support groups and what
they get from these experiences.
Sandra Lombardi, RN,
Leader of the San Diego Support Group
When I joined the San Diego support group 13 years
ago, PH was an isolating disease and patients felt very
alone, not knowing how to live their lives with the disease.
The support group was an important opportunity for
patients to connect with each other and end the isolation.
I wanted to be a part of the group to help in any way that I
could to improve the quality of life for our patients.
When I am involved in the support group, I really feel
like I am making a difference. It is so rewarding to help
even just one patient. If I can talk to a patient at a support
group and help that patient to get the resources he or she
needs to improve his or her life, it makes me feel a real
sense of accomplishment.
Fran Rogers, CRNP, Co-leader of the
University of Pennsylvania Health System
PH Support Group
I wanted to be able to help our patients
and their caregivers outside of a strictly clinical
setting. To be able to sit across the table from
them and enjoy a light lunch provides a different
setting for education as well as information sharing. Our
support group attendees share coping mechanisms and
cheer each other on. The group is an integral part of
helping patients live with PH.
I feel recharged after leaving a meeting. It is moving
to see the way patients and their family members comfort
and encourage each other. Support groups remind me why
we, as healthcare professionals, need to continue to help
provide hope in any way we can. I think support groups are
definitely one way to do that.
Amy Kimber, APNP, Leader of the WisconsinSoutheast PH Support Group
When I began working in PH, I made it my
priority to start a support group. I felt the group
would be an integral part of each patient’s care
plan. I believe it is important to provide patients
and caregivers with a forum for sharing ideas and
18
concerns about living with PH. My approach to patient care
is to make sure my patients have the tools they need to
understand and manage their own healthcare needs. I truly
enjoy helping patients realize that they are not alone in
their journey.
Chris Archer-Chicko, MSN, CRNP,
Co-leader of the University of Pennsylvania
Health System PH Support Group
I started the UPHS Pulmonary
Hypertension Support Group in 2008
because I wanted another setting to
educate patients and their families about
PH and how to live with this difficult disease. I felt it would
be helpful to have PH patients meet other PH patients.
Very simply, my involvement in our PH support group
brings me a sense of joy. My typical days are stressful
with numerous phone calls and emails, coordinating
procedures, completing tedious paperwork and trying
to get multiple tasks done in a timely manner. I enjoy
interacting with the patients in a more social and relaxed
setting. In our meetings, we invite patients to share
their experiences, offer comments and ask questions.
I often learn from the patients themselves. My greatest
satisfaction is watching one patient support another
through a difficult situation, such as getting used to
supplemental oxygen, coping with fatigue, facing fears, etc.
Antonia Heininger, BA, Contributor and Presenter for
the Rochester, N.Y., Support Group
In our work lives as healthcare professionals, we
see the patient as someone with a disease who needs
healthcare. We churn out prior authorizations, schedule
tests, etc. At the support group meetings, we see the
person and how they interact with their family, how
dedicated and hardworking their caregivers are and how
the disease affects them beyond the clinical setting. We
get to see their latest art project and pictures of their
grandchildren and hear their stories. These things are a
real motivating factor for me when I am swamped with
work; it helps me remember why I choose to work with
people with this disease.
I find inspiration from our support group. They remind
me every day not to take life for granted, to live life to
the fullest, and embrace challenges. If our patients can
face each new day and each new set of challenges with a
smile, then I can too. w
“ H e l p f u l h i n t s ” f r o m t h e ph p r o f e s s i o n a l n e t w o r k
I
t can be difficult to know when you should call your PH
center. Sometimes you shouldn’t wait for your next
scheduled appointment or phone call. Here are some
good reasons to pick up the phone.
• Worsening shortness of breath or exercise
tolerance: PH is a disease that can change over
time. Other things, like adding new medications, can
also change how you feel. Try to set a benchmark
for something you do every day, like walking to
the mailbox. Know how you feel when you do this
task. Do you have to stop once on your way to the
mailbox? Twice? If this changes, let your PH center
know.
• Increased oxygen needs: If you feel you need more
oxygen or you note lower saturations, call your PH
center.
• Weight gain: Weigh yourself every day and write your
weight down. If your weight goes up two pounds in
one day or five pounds in one week, give your PH
center a call. Rapid weight gain can often be a sign
of fluid buildup.
• Swelling in your legs or abdomen: This can be
a symptom of PH and/or a side effect of some
medications. Let your PH center know if this
happens.
• Constant or worsening dizziness or fainting: This
can be a symptom of PH and can also be a side
effect of medications. Let your PH center help sort
this out.
• New medications, including over-the-counter
medication: If any doctor (like your family doctor
or dentist) prescribes new medication, call your PH
center and let them know. Your PH center can make
sure that your new medication does not interact with
any of your current medications.
Often those permissions need to be renewed at
least annually. You will most likely hear from your
insurance company about this before your PH center
is notified. You should call your PH center and notify
them.
• If you notice you do not have any more refills of
your medication: Call your PH center 10 days prior
to running out of your medication. This way there is
not a scramble when you are down to just a couple
of pills.
• If you have a planned surgical procedure, such
as a colonoscopy, wisdom teeth removal or joint
replacements, let your PH center know so your
medical team can best plan to keep you safe.
• If your specialty pharmacy or family doctor
encourages you to call your PH center: Trust their
instincts and call your PH center if instructed to do
so, because sometimes your specialty pharmacy or
family doctor notices issues you may not see.
• Any questions that you have related to your PH:
Of course, if you have any questions about PH and
its treatment, or your specific treatment plan, you
should call your PH center.
• If you are going to the emergency room for any
reason, call and notify your PH Center.
When in doubt, contact your PH center. The
doctors, nurses and respiratory therapists who work
there are on the phone frequently. Sometimes when you
call your PH center, you may get their voicemail. Be sure
to leave a message so they know you called. w
By Crystal Weber, RN, PH Nurse Clinician, Pulmonary Vascular
Disease Center, Duke University, Durham, N.C.
DISCLAIMER
• If you are having side effects and recently began
a new PH medication: PH medications can have
unusual side effects. If you note new or worsening
side effects and you have just started a new
medication, give your PH center a call.
• Prior authorizations: Insurance companies often
require special permission to be on PH medications.
HEALTH MATTERS
When Should You Call Your PH Center?
We encourage readers to discuss their healthcare with their
doctors. This newsletter is intended only to provide information
on PH/PAH and not to provide medical advice on personal health
matters, which should be obtained directly from a physician. PHA
will not be responsible for readers’ actions taken as a result of
their interpretation of information contained in this newsletter.
19
HEALTH MATTERS
Pediatric Research Article continued from page 15
to be developed for pediatric patients.
Social Factors: Most people don’t really like to be
different, but in kids this can be even more true. Dr. Ivy
explains that it is a challenge to convince a small child to
carry a backpack or wear oxygen all the time when it makes
them feel like they stand out and are different from their
friends. Developmentally, children rely on social interactions
and understanding from their peers a great deal, and we
must take steps to support this process in a way that both
allows them to grow socially and addresses their medical
needs.
In closing, both doctors envision a world where they
can treat pediatric patients with more effective medications:
medications that are easy to administer, have minimal
side effects, and are dosed or even created especially for
By Colleen Brunetti, PH Patient
ask a PH Specialist continued from page 14
Transplant Article continued from page 16
as swelling in the legs, worsening shortness of breath,
fatigue or other symptoms. Get your medical certificate at
the visit. Carry your PH center contact numbers with you.
Ask your PH doctor who they would recommend you contact
in the area you are traveling if you need medical attention. w
In summary, for many patients with PAH, lung
transplantation remains a viable treatment option,
and if a patient’s disease is severe or worsening,
transplant evaluation should be considered. It is
better to be evaluated too soon, when a patient is
“too well” so that the center can follow along and
transplant can remain an option down the road should
the patient’s condition worsen. While lung transplant
requires a lot of medications and maintenance, it
does provide the chance to improve survival and
quality of life. w
The Quick Checklist:
1. Plan ahead and anticipate problems.
2. Keep emergency contact numbers for your PH nurses
and physicians with you.
3. Ask your PH doctor for a letter describing why you
need to carry your medications, pump and/or oxygen
with you. If carrying oxygen, you will need a medical
certificate from your doctor that describes why you
need oxygen and the flow rate per minute.
4. Contact the airline prior to booking a flight to determine
the policies on in-flight oxygen or POCs.
5. Allow extra time to maneuver through the ticketing area
and security checkpoints and to reach the gate.
6. Use transport assistance whenever possible to and
from the gates. Most airlines can arrange to have a
wheelchair available at each connection point if given
notice.
7. Carry a “reserve” of medications with you (in carry-on
luggage) in case your luggage does not make it to your
final destination in a timely manner.
8. Be active every one to two hours to prevent blood
clots. Stop frequently or get up and move around.
9. Have fun and enjoy your trip!
Answer provided by Eric R. Fenstad, MD, Cardiovascular Fellow, Mayo
Clinic Division of Cardiovascular Diseases and Internal Medicine,
Rochester, Minn.
20
children. As Dr. Barst stresses, this will only come with
increased collaboration between researchers, doctors,
pharmaceutical companies and the regulators (FDA).
And we cannot forget about safety — both long-term and
short-term. Most of the drugs we would treat children with
will continue to be used for years, if not an entire lifetime.
Knowing the effects of drugs long-term, especially in
children who are continuing to grow and develop, is critical.
To that end, the Robyn Barst Pediatric Research
and Mentoring Fund for Pulmonary Hypertension has been
established to raise funding and establish mentoring
programs for promising pediatric researchers and
practitioners. To learn more about this fund, visit www.PHAssociation.org/BarstFund w
For more information about transplants, be sure
to visit www.unos.org or www.ustransplant.org
By M. Patricia George, MD, University of Pittsburgh School
of Medicine, and Raymond Benza, MD, West Penn Allegheny
Health System, Temple University, School of Medicine,
Pittsburgh, Pa.
References:
Christie JD et al. The Registry of the International Society for Heart and Lung
Transplantation: Twenty-eighth Adult Lung and Heart-Lung Transplant
Report—2011. J Heart Lung Transplantation 2011; 30:1104-22.
Orens JB et al. International guidelines for the selection of lung transplant
candidates: 2006 update – A consensus report from the pulmonary
scientific council of the International Society for Heart and Lung
Transplantation. Journal of Heart and Lung Transplantation 2006; 25(7):
745-55.
Humbert M et al. Survival in patients with idiopathic, familial, and anorexigenassociated pulmonary arterial hypertension in the modern management
era. Circulation 2010; 122: 156-63.
Pulm Circ. 2011 Apr; 1(2):182-91.Lung transplantation for pulmonary
hypertension. George, MP; Champion, HC; Pilewski JM.
Transplantation. 2010 Aug 15; 90(3):298-305. Analysis of the lung allocation
score estimation of risk of death in patients with pulmonary arterial
hypertension using data from the REVEAL Registry. Benza, RL; Miller, DP;
Frost, A; Barst, RJ; Krichman, AM; McGoon, MD.
research corner
medical professionals
T
he question: How does 17β-estradiol (E2) exert
its protective effects in hypoxia-induced pulmonary
hypertension? Does E2 work indirectly by being converted
to certain metabolites or directly by activating the estrogen
receptor?
Why is this important? Even though women are more
frequently affected by pulmonary arterial hypertension (PAH),
they exhibit better right ventricular function and higher survival
rates than men. Women also appear to be protected from
hypoxia-induced pulmonary hypertension (HPH), a type of PH
that is distinct from PAH and that is associated with prolonged
exposure to low oxygen concentrations from chronic lung
disease, sleep-disordered breathing or residence at high
altitude. A better understanding of the effects of sex hormones
on the pulmonary vasculature and right ventricle is therefore
needed, since this 1) may help explain the reason for the
observed gender differences in PH and 2) may facilitate the
development of novel, hormone-derived therapies for PAH and/
or HPH.
Past studies: Several investigators have demonstrated
protective effects of E2 in animal studies of HPH or other
types of PH. It has also been demonstrated that the phase of
the menstrual cycle affects the ability of pulmonary arteries
to contract: pulmonary arteries from female rats with high
endogenous E2 levels contract less than arteries from female
rats with lower E2 levels or than arteries from male rats.
However, while these studies revealed mechanisms of how E2
affects modulators of pulmonary artery contraction, it remains
unknown how E2 affects the uncontrolled growth of cells of
the pulmonary artery wall that contributes to the narrowing of
the pulmonary vasculature. In addition, it remains unknown
how E2 improves the function of the right ventricle (a critical
determinant of survival in all forms of PH). Lastly, since E2
may work indirectly by being converted to certain metabolites
or directly by activating the estrogen receptor, it is important to
decipher which of these pathways mediates E2 protection in
HPH. This pathway may then be targeted therapeutically.
This study: Male rats with HPH were treated with E2 and
co-treated with either inhibitors of the E2 conversion process
or with an agent that blocks the estrogen receptor. While the
conversion inhibitors did not affect E2-mediated protection,
blockade of the estrogen receptor significantly attenuated E2’s
protective effects. This indicates that E2-metabolite conversion
is not necessary for E2 protection in HPH. Rather, it is E2’s
effect on the estrogen receptor that mediates its protection.
Further experiments revealed that both of the two
estrogen receptor subtypes (estrogen receptor–α and –β)
mediate E2’s actions. E2 exerted beneficial receptor-mediated
effects on both the pulmonary vasculature and right ventricle,
which were associated with inhibition of signaling pathways
that drive cellular growth and with augmentation of pathways
that inhibit cell growth. In isolated pulmonary artery endothelial
cells (cells that make up the lining of lung blood vessels), E2
again inhibited cell growth. However, this effect was only seen
in cells exposed to low oxygen concentrations, suggesting
that E2 exerts specific protective effects when oxygen levels
are low. Taken together, these results suggest that E2 exerts
hypoxia-specific and receptor-mediated inhibitory effects on the
growth of cells of the pulmonary vasculature and right ventricle.
Who may benefit from these findings: Patients with HPH
or PAH, healthcare providers and researchers.
The bottom line: While it is premature to make
recommendations on the use of estrogens for HPH, this
study indicates that in an environment characterized by low
oxygen concentrations, E2 may exert beneficial effects on
the pulmonary artery and right ventricle. Further exploration
of the pathways affected by E2 may, therefore, allow for the
development of targeted, non-hormonal therapies for both men
and women with HPH. This is of importance since no specific
pharmacologic therapy for HPH exists. In fact, the drugs that
are used for PAH may worsen symptoms in HPH since they
may decrease patients’ oxygen saturations. While we cannot
extrapolate the current results to patients with PAH, this study,
viewed in the context of previous investigations, raises the
possibility that protective estrogen receptor signaling may be
distorted in PAH, thereby making women more prone to the
development of the disease.
Where to find this article: Am J Respir Crit Care Med.
2012 Mar 1 (Epub ahead of print). PMID: 22383500.
List of authors: Lahm T, Albrecht M, Fisher AJ, Selej M,
Patel NG, Brown JA, Justice MJ, Brown MB, Van Demark M,
Trulock KM, Dieudonne D, Reddy JG, Presson RG, Petrache
I. Departments of Medicine and Anesthesiology, Richard L.
Roudebush VA Medical Center and Indiana University School of
Medicine, Indianapolis, Ind.
Funding: This article was funded in part by an American
Thoracic Society/Pulmonary Hypertension Association/Pfizer
Fellowship in Pulmonary Arterial Hypertension Research to
Tim Lahm. Please see the article for a complete list of the
investigators’ research support. w
HEALTH MATTERS
17-Beta Estradiol Attenuates Hypoxic Pulmonary Hypertension
via Estrogen Receptor-Mediated Effects
Article provided for Pathlight by Tim Lahm, MD, Division of
Pulmonary, Allergy, Critical Care, Occupational and Sleep Medicine,
Richard L. Roudebush VA Medical Center; Department of Medicine,
Indiana University School of Medicine, Indianapolis, Ind.
21
Advancing the cause
A Father and Son Team Up to Raise PH Awareness One PSA at a Time
S
teve Van Wormer, a PHA Board
pediatric PSA. News organizations
member, has four very important
that told the story and featured
things to communicate about
the video included PH, and none of them takes more
CenturyCityPatch.com and The
than a minute. That’s because
Burbank Times newspaper;
he has built these messages into
•
Embedded in two personal
four dynamic video public service
experience stories written by
announcements (PSAs) the length of
Marina Van Wormer, Steve’s
most commercials.
wife and Lucas’s mom. These
With funding from a Tom
were posted on two websites for
Lantos Innovation in Community
parents, Babycenter.com and
Service Award, Steve, who works in
SpanglishBaby.com;
Lucas Van Wormer reads the script for a PSA to raise
awareness about the need for research into pediatric PH.
Hollywood’s television industry, wrote
•
In social media messages
the scripts, assembled photos and worked with a professional
sent by PHA Board members and others to their own
designer to create additional images in PHA’s signature colors
contacts.
to make these messages fresh and distinctive.
In addition, Lucas’s performance and the publicity
Boosted by social media and public relations, these
around it led to a job offer to do more voice-over work in radio
PSAs have been shared widely by Steve, by PHA and by
and television like his father. To view all four PSAs, visit others in the PH community. Through them, we have conveyed
www.PHAssociation.org/MediaGuide/PSA/Samples
widely:
• The need for more research into treatments of
pediatric PH (voiced by Steve’s 10-year-old son Lucas,
who has PH);
• The importance of the Tom Lantos PH Research and
Education Act in Congress;
• An explanation of PH;
• An introduction to PHA.
The project has been not only creative, but has gained
wonderful exposure in diverse media. For instance, one or
more of the PSAs have appeared:
On YouTube;
On the PHA website;
On PHA’s Facebook page;
In email messages to our volunteer advocates to support
National Call-In Day for the Tom Lantos Act in Congress;
• On a satellite feed delivering all four messages to
hundreds of local television stations, courtesy of West
Glen Communications’ Nonprofit Give-Back program,
offering free satellite time for selected PSAs;
• In print and online news outlets around Los Angeles,
boosted by a UCLA Health Sciences press release on
Lucas, a UCLA patient, and his experience narrating the
•
•
•
•
22
Opportunity in the Lantos Awards
This awareness-raising project is an example of how the
Tom Lantos Awards can create opportunities for children and
adults, patients and caregivers who have been touched by
PH. The awards, funded by Gilead Sciences, provide monetary
grants of up to $5,000 each for projects that benefit the PH
community through approaches such as awareness-raising,
advocacy and enhanced patient services. Recipients of
these awards have done projects such as producing posters,
holding educational retreats and preparing bags of small toys
for children with PH.
The Lantos Awards selection process begins in the
fall, when PHA begins calling for applications involving a
written description of the project, its goal and its budget.
A committee of PH community members reviews the
applications during the winter and announces award
recipients in the spring.
Is there something you’d like to do to advance the
PH cause? If so, plan to apply for a 2013 Lantos Award.
For more information, contact Mollie Katz, MollieK@
PHAssociation.org or 301-565-3004, x774. w
By Mollie Katz, PHA Vice President, Community Engagement
A Family F igh ts B a ck Aga in s t P H
ADVANCING THE CAUSE
B
y April of senior year, most high
that Jake knew he would no
school students are thinking
longer be able to pursue his
about prom, graduation and
dream of becoming an athletic
heading off to college. High school
trainer, and he withdrew from
may be coming to an end, yet their
college for medical reasons.
lives are really just beginning. They
Perhaps that first year
will begin to learn a lot about who
after his diagnosis blinded us
they are and who they want to be.
all to the reality of his disease.
Two years ago, my little brother
Maybe we were just too scared
Jake was on this very path; he would
or delusional to imagine the
be graduating in a couple months
possibility that all the negative
Brooke (center) and Ellice (second from right) with
Jake (far left) and the rest of the Gunter family
and starting his first semester at
things we read about PH would
Temple University in the fall. He was just as carefree and
actually become Jake’s reality. One thing was for certain,
optimistic as any other 18 year old — until he went in for
we could no longer ignore it. We needed to get involved, to
a routine checkup for his ulcerative colitis and left in an
fight back.
ambulance.
I decided to create a fundraising page through the
While the doctor was performing a CAT scan, he saw
PHA website to tell people about my little brother and raise
that the right side of Jake’s heart was dangerously enlarged awareness of PH. I wanted to show him just how many
and had him immediately rushed to Children’s Hospital of
people believed that his life was worth fighting for. The
Philadelphia (CHOP). After spending five days in an intensive response I got was absolutely overwhelming. We were able
care unit and undergoing an extensive battery of tests, a
to raise more than $5,000 in just two weeks. It goes to
diagnosis of pulmonary hypertension was confirmed. From
show that people really can surprise you if you just give
that moment on, Jake would no longer be that carefree 18
them the chance.
year old whom he very much deserved to be. He found out
Our mom contributed with fundraising efforts of her
earlier than most who he was. He was now a person who
own as her office began a new program in which they
had PH, and I think I could safely say that he would have
would raise money for a different cause every other month.
rather been anyone else.
Many of her co-workers and friends had lived this journey
Our whole family spent the next few months digesting
with her from the very beginning, so they were more than
this diagnosis and helping Jake get accustomed not only
happy to have PH be their first cause. My family and I
to his first year of college, but also living his life with
have experienced great success in our initial fundraising
this chronic disease. We were very lucky that CHOP had
efforts and plan to continue to tell Jake’s story and raise
accepted him as a new patient, even though he was already awareness of PH any way that we can.
18, and even luckier that Dr. Brian Hanna, a PH specialist,
Jake loves to make people laugh. He is undoubtedly
was interested in taking on Jake’s case. Dr. Hanna knew
one of the funniest guys I know, and I guarantee most of
that we would be searching for more information on the
the people who know him would agree with me. Jake is
disease, and he actually forbid us to look at any website
smart in that natural, witty kind of way that everyone always
other than PHA’s. With the help of Dr. Hanna, Jake was able wishes they could be. Jake dreams big, he has plans for
to adjust to his new medical regimen and to integrate his
himself that most would consider impossible given his
disease into his life. Jake appeared to be living successfully condition. He is loyal and kind. Most importantly, my little
with PH.
brother is brave. In the two years since his diagnosis I have
Unfortunately, his good fortune only lasted about nine
never heard him complain, not even once. I know Jake
months. When Jake went to CHOP for his annual heart
struggles with his disease every day, but he chooses to
catheterization the following summer, we were informed
suffer in silence. Life has dealt him a less than ideal hand,
that the medicine was not effectively controlling his PH and
yet he continues to joke his way through the pain; Jake may
that he would have to be put on a pump that would deliver
be a person who has pulmonary hypertension, but he has
medicine into his body 24 hours a day. Jake made a valiant not, and never will, let his diagnosis define him. w
effort to return to school in the fall, but he quickly realized
By Brooke Gunter, Sister to PH Patient Jake, and Their Mother Ellice
that his body simply could not handle it. It was at this time
23
pulmonary hypertension association
A personal
fundraising page
is quick and
easy to set up!
You can use
it to promote
workplace and
celebration
fundraisers, too!
OUR
WORK
PLACE
HA$ A
HEART
empowered by hope
At Work
Educate your co-workers
about PH and get them
involved with the fight
against PH. Host a
Blue Jeans for PH day
or a bake sale — the
options for workplace
fundraisers are endless!
www.PHAssociation.org/Fundraise/AtWork
At a Celebration
Take your special life milestones to
the next level and raise awareness
and funds for PH. Ask friends and
family to make a gift in your honor
for your birthday, wedding, Bar or
Bat Mitzvah or retirement party.
Or, give a gift to PHA in your
guests’ honor!
www.PHAssociation.org/
IN HONOR
OF OUR
many ways to do it. Anyone can be a fundraiser — patients,
family members, friends and medical professionals.
There’s a fundraiser to fit every lifestyle! At PHA, we break
fundraisers into four types — fundraising online, at work,
at celebrations or with a special event. Every fundraiser is
unique and completely what you, the organizer, make it. w
Online
Join the fight against PH
and make a difference
without leaving your
home! Tell your PH story
on your own personal
fundraising page and
then share the link with
your friends and family.
D
o you want to get more involved in the fight against PH?
Consider hosting a fundraiser! Aside from raising money
to fight PH, fundraisers are great ways to raise PH
awareness and educate your friends, family and co-workers
about PH.
The best part about fundraising is that there are so
ADVANCING THE CAUSE
Grab a Piece of the Fundraising Pie!
Join the Fight Against PH by Planning a Fundraiser
WEB OF
FRIEND$
empowered by hope
S tart
here !
www.PHAssociation.org/Fundraise/Online
With a Special Event
Ready to roll up your sleeves
and engage your entire
community? Plan a special
event! Get creative! Special
events can be anything from
Fun Walks to galas to Periwinkle
Parties to pub crawls!
www.PHAssociation.org/SpecialEvents
Fundraise/AtCelebrations
LIVE$
empowered by hope
Planning a special event takes more time and effort
— it’s a bigger piece of the pie. But, it’s worth it!
With a special event you have the potential to reach
the most people and raise the most funds for PHA!
Get started! Not sure where to start? Ask us!
We have a dedicated team of staff members here to
support you every step of the way. We have everything
you need to make your fundraiser a success!
Meet the team! Ready to launch your personal fundraising page, host your
workplace fundraiser or fundraise at your celebration? Contact Ellen Leoni at
[email protected] or 301-565-3004 x756. Jessica McKearin and Leslie
Mahaney are here to help you with brainstorming, questions and everything special
events-related. Just email [email protected] or call 301-565-3004 x765.
24
L to R: Leslie, Ellen and Jessica
In
Y
our prescription copayments cost more each
month than your rent! Which organization can
you contact for financial assistance to help cover
your larger-than-life insurance costs?
Pin on Your PH Pride with a
PHA Logo Pin!
PHA Member Special: Don’t miss
out on this limited-time offer!
40% off!
$3)
(N o w o n l y
A. Social Security Administration
B. Goodwill
C. Caring Voice Coalition
D. Medicare
If you answered Caring Voice Coalition (CVC),
you know your resources! CVC provides financial
assistance to eligible PH patients, in the form of
monetary grants, to help remove the barriers to
starting or remaining on PH therapy.
Learn more about financial assistance
resources at www.PHAssociation.org/
FinancialAssistance or contact 301-565-3004
x773. w
ADVANCING THE CAUSE
surance Finds:
Financial Assistance
Pop Quiz!
Only PHA Members are eligible for this special,
limited-time offer. Order now through Oct. 2
at the PHA Online Store,
www.PHAssociation.org/Store
or give us a call.
Not a member?
Visit www.PHAssociation.org/Join to become
a member of PHA today!
Questions? Call the PHA Office at 301-565-3004.
CHRISTEN WHITE TOLD HER FAMILY SHE WANTED
TO LEARN MORE ABOUT PH. TODAY, THEY WANT THE
WHOLE WORLD TO KNOW MORE.
Stephen White remembers the phone call he got from his 22-year
old daughter, Christen, just a few months before she succumbed to
PH in 2002. She had applied for a scholarship for the Pulmonary
Hypertension Association’s 5th International PH Conference. When she
got it, she called her dad to ask him to accompany her on this journey.
To read how the White Family rallied to meet the
challenge of PH, visit PHAssociation.org/Give/White
Like Stephen and Andrea White, you can strike a blow
against PH by designating PHA as a legacy beneficiary. Your
contribution will help shape a brighter future for all those
affected by PH. For details, call us at 301-565-3004 x756 or
email [email protected]. Visit our website for more
information at PHAssociation.org/Give.
25
ADVANCING THE CAUSE
PHA National Call-In Day 2012:
Congressional Staffers Inundated with Phone Calls for a Cure
PH
ers across the country called their
Members of Congress during PHA
National Call-In Day on April 26 to urge
them to co-sponsor the Tom Lantos PH
Research and Education Act of 2011.
Thanks to everyone who called and made
the day a resounding success!
After PHA National Call-In Day, Rep.
Devin Nunes (R-CA) and Rep. Richard Neal
(D-MA) agreed to co-sponsor our bill, the
only PH-specific bill in Congress.
• “Just wanted to let you know that both
my mom and I called our representative and
senators in South Carolina. I am going to
drop off personal letters from my support
group members asking the representative
and senators to co-sponsor the Tom Lantos
PH Research and Education Act,” reports
Doug Taylor of South Carolina.
Melanie Kozak
Help PHA Turn Your Phone Calls for a Cure Into More
Co-sponsors!
PHA has been following up with the Congressional
offices you called during PHA National Call-In Day to ask
them to co-sponsor the Tom Lantos PH Research and
Education Act. Several members of the PH community
have decided to follow up with their Members of
Congress individually to continue to advocate for a cure.
Here are just a few of their ideas:
• “I will be following up with printed materials about
the Lantos bill and probably a DVD we made about
my mom,” says Erica Huntzinger of California.
• “I left word with the health legislative
assistants for Senators Cornyn and Hutchinson
and Representative Canseco. Since I am on a roll,
I’m going to try to set up some meetings so that I
can meet face-to-face and talk about our needs,”
explains Sylvia Creach of Texas.
If you’re interested in starting or continuing to
advocate to your Members of Congress, PHA has
resources to help. Contact Elisabeth Williams at 301565-3004 x753 or [email protected] to learn
more about the steps you can take to help get us closer
to a cure! w
By Elisabeth Williams
PHA Grassroots Campaigns Manager
PHA’s Conference Advocacy Challenge:
Increasing PH Awareness in Congress One Contact at a Time
S
ince January, we’ve been counting
all emails, phone calls, letters
and Congressional visits from PH
community members. Our goal was
to inundate Congress with more than
1,100 requests for co-sponsorship
of the Tom Lantos PH Research and
Education Act by the end of PHA’s
10th International PH Conference and
Scientific Sessions in June 2012.
PH community members gathered
from all over the world at PHA’s
Conference and many of them shared their stories in
letters they wrote to their senators and representatives.
How many messages did the PH community
collectively send? As we go to print, our count stands
26
at more than 575 — and that doesn’t
even include the letters from Conference!
Stay tuned for the fall issue of Pathlight
for an official count and a full wrap-up of
PHA’s Conference Advocacy Challenge or
visit www.PHAssociation.org/Advocacy/
Victories!
PHA’s Conference Advocacy
Challenge is over, but it’s never too late to
advocate for the PH community. Contact
Elisabeth Williams, PHA’s Grassroots
Campaigns Manager, at ElisabethW@
PHAssociation.org or 301-565-3004 x753 to find out
how to talk with your Members of Congress about
research and education that will save PH patients’
lives. w
PHA Board Chair Laura D’Anna Spreads PH Awareness to Congress
ADVANCING THE CAUSE
I
n April, PHA Board Chair Laura
importance of doing these visits!
D’Anna came to Washington,
I’m continuing to follow up with
D.C., to raise PH awareness
Rep. Rohrabacher, Sen. Feinstein
and ask her senators and
and Sen. Boxer by email. I’ve also
representative to co-sponsor the
sent them additional letters from
Tom Lantos PH Research and
their constituents so they know
Education Act of 2011. We asked
this issue is important to many
Laura a few questions about her
PH community members in their
experience on Capitol Hill.
respective districts.
What was the best part of
Why do you think the PH
your day on the Hill? We were
community should advocate for
received warmly in each office,
the PH Research and Education
PHA Board Chair Laura D’Anna and her children Aidan
and
Olivia
raise
PH
awareness
on
Capitol
Hill.
and I appreciated the opportunity
Act? This legislation will allow
to connect the importance of our bill to my personal story
us to continue to receive critical support from the NIH to
of losing my sister to PH and the stories of countless
fund PH-specific research, and it will assure additional
others who remain undiagnosed. I also really valued the
CDC-driven support for education for medical professionals
opportunity to conduct these visits with my two children. It
and the public. Beyond the specifics contained in the bill,
was their first time on the Hill, and sharing with them the
if passed, this legislation would significantly raise the
importance of being an advocate for causes in which they
awareness of PH within Congress and would then facilitate
believe was a truly memorable experience for me.
additional requests in the future.
What tips do you have for PH advocates? The most
In some ways, this process is a numbers game,
important thing is for advocates to tell their stories in their
and those who have the greatest number of constituents
own words. Elected officials and staffers hear thousands
advocating for any particular issue typically gain the
of requests from their constituents annually, so in the
support of their legislator. Because PH affects relatively
few minutes we are with them, it is important to highlight
few Americans compared to other diseases, it is even more
why our request is critical. Our story is a compelling one
important that we have a good proportion of our community
given the complexity and severity of PH, the need for
talking to their Congressional representatives.
additional research, the requirements for specialized
Anything else you’d like to add? We can move this
knowledge among medical providers, the fights to obtain an legislation through, but we need your help! If you have
accurate diagnosis and appropriate care, all that has been
already reached out to your Members of Congress, please
accomplished through PHA, and the support we have at the
do so again. I don’t think they can hear from us too often.
National Institutes of Health (NIH) and Centers for Disease
Numbers matter and we are counting on you! PHA has
Control and Prevention (CDC).
several resources available to help you:
And PHA makes it easy to do with a wealth of
• If this is your first time contacting your Members of
information and resources at www.PHAssociation.org/
Congress, please log on to www.PHAssociation.org/
Advocacy/Toolbox. The staff is also on hand to assist with
TomLantosPHResearchAct/Senate and fill out a letter
in-person visits and letter-writing campaigns.
to your Members of Congress today. All you need to do
You’ve followed up with each of the offices since
is add your contact information and share your story!
your visits. What has been the response? I visited staff
• Visit www.PHAssociation.org/Advocacy for specific
from the offices of Sen. Barbara Boxer (D-CA), Rep. Laura
tips on how to create an email request to set up an inRichardson (D-CA) and Rep. Dana Rohrabacher (R-CA).
person visit with your senators or representative.
We were not able to meet with staff from Sen. Dianne
• Contact Elisabeth Williams at 301-565-3004 x753 or
Feinstein’s office (D-CA), but we did leave a personalized
[email protected] to get more involved in
letter and a stack of letters from PH community members.
educating your Members of Congress about the only
Since my visits, I sent follow-up notes to all of the staff with
PH-specific bill in Congress. w
whom we met. I’ve already received confirmation from Rep.
Richardson’s office that she will co-sponsor the bill, which
Interview conducted by Elisabeth Williams, PHA Grassroots
Campaigns Manager
was very exciting news. For me, it really demonstrated the
27
ADVANCING THE CAUSE
Washington Journalist Explains How to Capture Media Attention
H
ave you ever listened to a news report and
wondered why editors chose the stories they did?
Understanding what makes a story attractive to
journalists makes a big difference in successfully getting
a PH-related story into the media.
To explain what wins a journalist’s attention, PHA
turned to Robert McCartney of the Washington Post.
McCartney, a local columnist and former top metro editor
at the Post, has often evaluated and selected stories
offered by advocacy organizations like PHA. He says that
to be effective, story ideas should contain as many of the
following elements as possible:
• Timeliness. A journalist’s job is to tell the news
— what is happening now. To gain attention,
McCartney recommends contacting the media with
something that’s just happened, recently happened
or is just about to happen. Connecting your story
to a trend also provides a helpful context for your
idea within a larger scope. For instance, the trend
of more children surviving to young adulthood with
PH can be the backdrop for the personal story of a
patient under age 30.
• Relevance to the audience. Will your idea or event
have the most impact in a suburb or part of a city?
McCartney says suburban or neighborhood media,
including highly localized online news sites, may
be the best route. If pitching a story in a larger city,
look for a local angle that’s meaningful to a wider
population, he says. Then you’ll stand out more
from the many other worthy organizations also
competing for coverage.
• Human interest. Stories about overcoming
adversity, spurring community involvement and
overcoming the odds are good attention-getters,
McCartney says. Personal experience stories about
living with PH are rich in these themes.
• Visual material. Print, television and online media
need to look good as well as sound good, so
the opportunity to use photos or video appeals
to editors. McCartney emphasizes that visuals
should help tell the story. Images of people doing
activities are one strong approach. Other ways to
provide good visuals might be staging a balloon
launch, showing a crowd expressing its spirit, or
presenting medical equipment for PH patients with
an explanation of how it is used.
28
• An expert. Especially with a disease as little-known
and complex as PH, a doctor, nurse practitioner
or other allied health provider brings the depth of
knowledge often needed to answer journalists’
questions.
• A one-page fact sheet. Putting the key information
at a journalist’s fingertips is important, McCartney
notes. Always include dates, times, places and
contact information for special events. For stories of
PH patient experiences, write a very brief summary
of the patient’s story, highlighting what makes it
interesting or inspiring. Add basic information about
PH — the condition, symptoms and treatment — or
enclose PHA materials as background.
Who to Contact
McCartney also recommends that those contacting
the media approach a variety of staff at a single news
organization simultaneously. For instance, a story about
a PH special event might be pitched to a local editor,
a local reporter, a health editor, a health reporter and
someone who covers nonprofits and philanthropy. The
more people you try, the more likely you are to find your
idea accepted.
He says the fastest way to get the right names is
to call the newsroom and ask. When pitching your idea,
however, be sure to tailor your message — showcase
the health angles to the health journalists, for instance.
Any single news organization is not likely to cover
PH-related stories often, McCartney says, so volunteers
may want to put news organizations or journalists
in priority order. He suggests saving the very most
compelling stories for the news outlets most important
to your effort, while sharing the lesser ones with a wider
range of newsrooms.
PHA’s Advocacy & Awareness department always
welcomes new volunteers interested in seeking coverage
through our PHAware Campaign. We are also available
throughout the year to help you solve media relations
challenges. Visit www.PHAssociation.org/Awareness
to learn more, or contact Elisabeth Williams at 301-5653004 x753 or [email protected]. w
By Mollie Katz
PHA Vice President, Community Engagement
Advocate for PH This August (Without Leaving Your Home State!)
What is your advice for PH community members who
want to visit their Members of Congress this August?
Dick Tunstall: Be persistent, keep focused, know
your facts and be professional. Before that first visit, I
practiced, practiced, practiced what I was going to say. I
also had a one-page sheet that served as my 30-second
elevator pitch with quick answers to questions about
the disease and the bill. I spend the first few minutes
of every visit walking staffers or Members of Congress
through that information sheet.
Diane Ramirez: Get someone else to go with you.
Remember, you don’t have to be a patient to advocate
for this bill! Caregivers and loved ones also have been
touched by PH. Their experiences are valuable to share.
Joan Stevenson: I have three pieces of advice:
1. Be prepared with facts and props to show what it’s
like to have PH. It could be a medication list with the
costs of each drug or simply showing your oxygen
tank, pump or other medications.
2. If you don’t know the answer to a question, say you
ADVANCING THE CAUSE
T
his August, as Congress goes into
will look it up and get back in touch with
recess, Members will return to
the congressional office.
their states to meet face-to-face
3. Don’t forget to smile!
with their constituents about the
Share a memorable experience that
issues that matter to them. Take this
happened during one of your visits.
golden opportunity to meet with your
Dick Tunstall: Rep. Jim Himes
Members of Congress and urge them
was a newly elected member and rather
to co-sponsor the only PH-specific
new to his office in Stamford, Conn.,
bill in Congress, the Tom Lantos
when my group met with him. One of
Pulmonary Hypertension Research
Dick Tunstall (back row, left) with Rep.
the PH patients, a resident of Stamford,
and Education Act.
Himes (D-CT) (back row, right)
pointed out a landmark outside the
To get you started, here’s advice from three
window. Jim admitted he wasn’t sure whether he was
advocates who have found Congressional meetings
looking west or north because he’d never really looked
effective and rewarding.
out the window before. We kidded him about showing
What was your first district visit like?
him around to become more familiar with his district,
but the lesson there is sometimes these Members of
Dick Tunstall: At first, I had trouble getting a
Congress don’t know everything. It’s our responsibility
meeting with my Members of Congress, so I decided
to set up appointments toward the end of the summer.
to teach them about the need for more PH research and
education.
Around August, it’s easier to set up appointments with
Diane Ramirez: After meeting with Elizabeth Dole,
Congressional Members because they have more time
and are more relaxed. That’s how I got my first visit with
the former Senator from North Carolina, my group and
then Rep. Chris Shays in his district office in Connecticut. I stood up for a photo with her. As we stood there, one
Rep. Shays didn’t make a commitment after that
of the patients unhooked her Remodulin® pouch and
placed it around Sen. Dole’s waist. She was shocked by
first visit, but I made a second visit and that meeting
was a slam dunk. He was familiar with the bill and
the weight. She gave each of us a big hug and whispered
pulmonary hypertension and agreed to co-sponsor almost “thank you” in my ear. It was a day when the joy and
immediately.
tears and all the hard work made sense!
Why do you think meeting with your Members of
Congress is important?
Joan Stevenson: It is important because PH is lifethreatening, but it isn’t common. The more we visit our
elected legislators, the more they will be aware of PH.
Diane Ramirez: When I stand up and share about
my life with PAH and talk about the help we need for
research and a cure, I have become an integral part of
the solution. I feel like I am actively making a difference
for myself, my friends, my family and the PH community.
It’s an incredible feeling, and I want everyone to feel this
at least once in their PH journey.
Visit www.PHAssociation.org/Advocacy/
DistrictVisit or contact Elisabeth Williams at 301-5653004 x753 for more advice and resources to help you
with your district visits in August. w
By Elisabeth Williams
PHA Grassroots Campaigns Manager
29
advancing the cause
FDA Patient Representative Program Lets FDA Hear Patients’ Voices
A
dvocacy has always been a central component of our
work at PHA. We advocate on Capitol Hill for the Tom
Lantos PH Research and Education Act, we join with
other groups in calling for adequate funding of research at
the National Institutes of Health, and we make the case
for certain specific disability policy changes at the Social
Security Administration.
But did you know that the Food & Drug
Administration (FDA) offers opportunities for patients
with serious or life-threatening diseases to represent
their disease communities when new products are being
reviewed?
The FDA, which approves the safety of drugs and
medical devices, has woven patients’ concerns into
its approval process since the 1990s, when the HIV
community sought to express its voice as treatments for
HIV were first becoming available.
How the Program Works
The Patient Representative Program allows patients,
caregivers, medical professionals and advocates of those
affected by a rare or life-threatening disease to play a
direct role in the decision and policy-making process
at the FDA. Patient representatives attend biannual
meetings, provide disease-specific perspectives and
vote on issues pertinent to their disease communities
when a product or therapy (drug, biologic or medical
device) related to their illnesses is under review. Patient
representatives have worked with the FDA on illnesses
such as cardiovascular disease, lung transplantation,
lupus, sickle cell disease and obesity.
The goal of this program is to help the FDA
understand the unique objectives and needs of those
affected by rare and life-threatening disease. Most FDA
policymakers are scientists and physicians looking at
new products from a technical perspective. Patient
representatives, on the other hand, bring knowledge and
insight into how people actually use drugs and medical
devices. Often they note circumstances that others with
decision-making power might have overlooked.
The Patient Representative Program allows people
without advanced degrees to play a significant role in
the decisions made by the FDA. The FDA regards these
represenatives as spokespersons for the community of
others with the same disease. While there is no formal
education requirement, detailed knowledge of your
specific disease and a strong advocacy background is
preferred. Before each meeting, patient representatives
are given approximately 10 hours of scientific reading.
The FDA’s Office of Special Health Issues
provides orientation on an individual basis for patient
representatives. The orientation includes basic
information about the mission and structure of the FDA,
the function and structure of advisory committees, the
role and responsibilities of the patient representative,
and conflict-of-interest information pertinent to being
designated a special government employee and receiving
compensation for relevant service, travel and lodging.
New patient representatives may also be able to observe
an advisory committee meeting before they begin serving
in order to better understand the deliberation process.
The FDA encourages these representatives to be in touch
with others who have filled this role to learn from their
experiences.
Take Action Now
Are you interested in applying to represent the
PH community to FDA? An application can be found on
the FDA’s website, www.fda.gov, along with detailed
instructions on pursuing the opportunity. You may also
contact Mollie Katz at PHA to discuss your interest at
[email protected] or 301-565-3004 x774. w
By Emily Dreckshage
Former PHA Advocacy & Awareness Intern
Welcome, Erin Wiegert, Executive Program Associate!
As PHA’s Executive Program Associate, Erin is part of the team that supports the work of
PHA’s president. Erin serves as the primary liaison to PHA’s Board of Trustees, maintains
PHA’s historical archives, assists with PHA’s corporate programs and assists with other
projects that are of priority for the president and the organization. Erin graduated with a B.S.
in Journalism from Boston University. She can be reached at [email protected] or
301-565-3004 x762. w
30
Thank you, Interns!
extends its heartfelt thanks to our spring 2012 interns. They have made a real difference in the programs and
services PHA provides. To learn more about PHA’s internship program, visit www.PHAssociation.org/Internships w
Emily Dreckshage, Advocacy and Awareness
While at PHA, Emily sought to increase the patient’s role in PHA’s advocacy and awareness
campaigns. By updating special events packets and media kits as well as directly reaching out to
PH community members, she helped demystify this often-intimidating process. Emily helped raise
awareness for PHA’s second annual National Call-In Day and encouraged constituents to reach
out to their Members of Congress. She also worked on the Early Diagnosis Campaign and wrote
an article for this issue of Pathlight (see p. 30). “My favorite part of this internship was speaking
with patients and support group leaders. Their passion was contagious and provided me with
limitless inspiration for this underrepresented cause,” says Emily. This fall Emily will begin her
senior year at the University of Maryland, where she is majoring in Public & Community Health,
with a minor in Spanish. She eventually hopes to pursue a career in nonprofit management.
advancing the cause
PHA
Ashley Kallarakal, International Services
During her internship, Ashley helped prepare for the International Leaders’ Summit at PHA’s 10th
International Conference. She also helped increase international membership in PH Clinicians
and Researchers (PHCR), PHA’s medical membership network for physicians and researchers.
She worked to raise awareness of World PH Day, and helped maintain communication with
international PH organizations. Ashley graduated from Boston College in May 2011, and she
is currently working on her master’s degree in Public Health at George Washington University,
concentrating on Global Health Communications. She works part time for Dhoonya, a Bollywood/
fusion dance fitness studio, and she says, “It’s funny how health has managed to take over my
life between my MPH, working with PHA, and teaching and dance classes for Dhoonya. I love it!”
Ashlynn Profit, Marketing and Communications
Ashlynn’s main task was to assist the Meetings & Conference Planning Department with PHA’s
10th International PH Conference. She wrote and designed Table Talk Tidbits, a pre-Conference
newsletter highlighting what to expect at Conference. She developed a Conference flier for
families, researched and secured a Conference photographer, assisted with adding information
into the Conference mobile application, and helped edit the Conference Program/Handout book.
Ashlynn also wrote for PHANews, PHA’s biweekly e-newsletter, and helped plan Table Talk, the
Conference on-site daily newsletter. Ashlynn says, “My favorite part about working at PHA was
learning so many new things from a great department and feeling like everything I did actually
meant something to someone in the amazing community PHA serves.” She is a junior at George
Washington University, majoring in Communication and minoring in Journalism.
Danica Sun, Volunteer Services
Danica Sun is a recent graduate of Florida State University. She has a special connection to PH:
her aunt, Joy Morgan, has had PH for more than seven years and is the Central Florida Support
Group Leader. During her internship, Danica interviewed many support group leaders and Patientto-Patient Support Line volunteers to promote new programs and resources for the community. In
addition, she worked closely by phone and email with new leaders, helping them to start patient
support groups. This fall Danica will enter her first year at Ave Maria School of Law in Naples, Fla.
In her spare time, she will help coordinate a 5K/PHun Walk fundraiser with her aunt. “Interning at
PHA, and especially being a part of the Volunteer Services team, has been an absolute privilege
and an asset to my future career goals,” Danica says. “Most of all, I’ve enjoyed working with the
most wonderful individuals on the planet, our support group leaders and Support Line volunteers!”
31
ADVANCING THE CAUSE
i S e e k R a i s e s P H A wa r e n e s s i n C h i n a
32
O
n March 4 the iSeek PH Cultural
Center, a Chinese non-governmental
PH organization, held an awareness
activity named “Seeking Blue Lips and
Focusing on Pulmonary Hypertension.” This
was one of the first times that a Chinese NGO spread
PH awareness to the general public. More than 1,000
people witnessed the activities at the iSeek booth,
which spurred strong responses from websites, TV,
newspapers, and the like.
Professor Chen Jingyu, an expert in lung
transplantation and a representative of the National
People’s Congress, educated the public about PH
patients and their symptoms, such as blue lips. He
also advocated for equality among healthy individuals
and PH patients; currently, treatment costs are high
and the medical system for rare-disease patients in
China is poor. Dr. Xu Xiqi, who is a PH specialist at No.
361 Hospital, also talked about the origin of PH and
treatments.
Many PH patients enthusiastically participated
in the day’s activities. One attendee sang her song,
“Stubbornness,” which helped all of us understand the
strong spirit of PH patients. Chang Xinyue, a girl from
Shannxi, spoke of her difficult journey with PH, which
moved everyone in the audience. Yong Mei, a famous
actress as well as the spokeswoman for the Rare
Disease Office of the China Charity Federation, cheerfully
sang along with PH patients.
These activities also provided a platform to
international
news
share medical information. Several doctors gave free
consultations, PH patients shared their experiences
with newly diagnosed patients, and patients and their
families spoke with one another about transplantation
and medicine.
More than 99 percent of the visitors had never
heard of pulmonary hypertension, but they were quite
willing to join the activities and leave their blue lip prints.
We have collected more than 100 blue lip prints and
will keep on collecting from this day on to promote PH
awareness. The activities also promoted Rare Disease
Day and the “PuckerUP4PH” campaign in China. The
collection of blue lip prints will be undertaken by iSeek
among universities and residences in Beijing.
It is important to raise awareness of PH in China
because PH patients are not entitled to financial
assistance for their medications; all of their treatments
are self-paid. Although a few of the PH pharmaceutical
enterprises have charitable programs, more than 80
percent of PH patients cannot afford treatments, which
leads to unnecessary deaths every month. iSeek tries
its best to provide information to patients about medical
care, education, employment and traveling. iSeek also is
working to achieve early diagnosis, early treatment, and
treatment coverage.
The event ended with iSeek’s connection to three
new PH patients. We are now seeking appropriate
medical support for those individuals. w
By Ziye Li, Executive Director, iSeek PH Cultural Center, Beijing
International Highlights
W h a t ’s G o i n g o n A r o u n d t h e Wo r l d ?
• In Argentina… Each month, HIPUA (Hipertensión
Pulmonar Argentina) hosts meetings for patients
and caregivers called “Learning to Live with
PH.” They consist of an education program
led by hematologists, nutritionists, emergency
medical technicians, doctors and alternative
therapy practitioners. The program also brings in
psychologists to help PH patients deal with the
emotional toll of living with the illness.
• In Europe and the U.S.... The National Organization
of Rare Disorders (NORD) in the U.S. has teamed up
with the European Organization for Rare Diseases
(EURORDIS) to create communities for rare-disease
patients around the world. The goal is to help
patients who speak different languages connect with
one another. For more information, visit www.rareconnect.org/en/community/
pulmonary-hypertension
• In Indonesia… The first Indonesian PH Support
Group was held in March 2012. Six patients
attended from Jakarta, including a pediatric PH
patient. The “Indonesian PH Family” has connected
with 15 PH patients in that country.
• In Israel… The second annual Yarid Shira, in
memory of PH patient Shira Dinur, was held on
May 28, 2012. The evening consisted of music,
entertainment, a raffle and buffet. All proceeds went
to the Israeli Pulmonary Hypertension Association.
ADVANCING THE CAUSE
W
ith more than 55 PH associations worldwide, there
have been some exciting developments in the global
PH community. These international highlights are a
testament to the hard work on the part of PH community
members everywhere!
international
news
For more news from around the world, visit www.PHAssociation.org/PHInternational w
By Meghan Tammaro, PHA International Services Manager
Communities Across the Globe Celebrate Wor ld PH Day i n t e rnneawt si o n a l
T
he Asociación Nacional
representatives and health
de Hipertensión Pulmonar
professionals. Nurses,
(ANHP) created World
too, played a crucial role
Pulmonary Hypertension Day,
in World PH Day because
May 5, to raise awareness
they are so closely linked to
of PH on a global scale. The
patients and they can claim
event consisted of a Scientific
World PH Day as their own.
Symposium on May 4 for PH
ANHP is very proud
physicians, followed by the main
to belong to the PH
World PH Day events, a cocktail
community. We don’t
Attendees of World PH Day events in Madrid, Spain
gala and the ANHP General
feel the need to create
Assembly in Madrid, Spain, on May 5.
a worldwide organization, but we strongly believe in the
World PH Day was truly an international event. Not
power of raising our individual voices for one common
only did patients’ organizations, rare-disease associations, interest, the PH patient, regardless of where they live and
international organizations and scientific societies endorse what organization they belong to.
May 5 as World PH Day, but many patient organizations
We believe that we are small because prevalence
also held events in their own countries to celebrate it.
of PH is not high, but we are wrong; World PH Day taught
Though the main celebration was in Madrid, satellite
all of us we are not alone. It is a privilege to know that a
celebrations took place in New Zealand, Argentina,
patient in Madagascar or a civil servant in New Zealand
Israel and the U.S. In total, 40 PH and related disease
can say, “I own World PH Day.” And other owners will
organizations endorsed the event.
answer, “Yes, you do. Take care of it and make it grow.” w
World PH Day is the day of the disease. While
By Juan Fuertes GuillÁn
patients can participate and take pride in the event, so
Coordinator, Asociaci—n Nacional de Hipertensi—n Pulmonar
too can clinicians, researchers, pharmaceutical company
33
ADVANCING THE CAUSE
s u pp o r t g r o u p s
Spotlight on a Patient-to-Patient Suppor t Line Vounteer: Rita Orth
F
or years, I thought my difficulty
man but was having a hard time adjusting
breathing was because I was
to getting help, as he had just been
overweight and needed to exercise
diagnosed with PH. It became clear how
more. However, in 1999, I was
overwhelmed and depressed he was.
diagnosed with PH. I was overwhelmed
After he was on the phone with me for a
and fearful, so I began looking into
few hours, his entire demeanor changed.
resources at PHA. During the first few
Being a Support Line volunteer, you hear
months of being diagnosed, calling the
many times how grateful someone is,
Patient-to-Patient Support Line helped
but hearing it from this man saying, “You
me through my toughest times. My
don’t know how grateful I am” was one of
outlook on my diagnosis changed, and I
my most memorable experiences.
I believe my role
felt a new hope.
Did you ever have a caller who affected
About six years ago, I decided
as a Support Line
you emotionally or brought you to tears?
I wanted to become a Support Line
volunteer is to
One time I had a caller who was
volunteer because I was very passionate
alleviate the fears and
about helping patients and giving them
a woman in her early 30s. She just had
anxiety of patients.
a child and lived near me. The woman
the same support I was given years ago.
was just diagnosed with PH and was
I’ve been living with PH for more
than 13 years. Prior to that, I was a nurse. My role as
absolutely devastated. I tried to lift her spirits on the call,
as well as speaking to her husband who was also upset.
a Support Line volunteer has allowed me to continue to
help others.
I invited them to my support group meeting, and after
As a Support Line volunteer, the calls I receive deal attending the meeting, they told me, “You’ve given us
hope; thank you.”
with a multitude of issues and a variety of emotions.
Sometimes I’m crying with the patient; other times there
Do you ever feel like you saved someone’s life?
is a lot of laughter and gratitude. I believe my role as
I’ve told individuals that back when I was diagnosed
a Support Line volunteer is to alleviate the fears and
with PH, there was only one therapy. Now there are nine.
anxiety of patients.
I tell them PH is not a death sentence. I also suggest
PHA asked me about my experiences as a Patientto-Patient Support Line volunteer, and here’s what I said: they see a medical professional who has had patients
with PH in the past. I stress that it’s important to find
Why should someone call the Support Line?
a doctor who knows how to treat PH. I tell them to ask
the current doctor, “Do you treat anyone with PH?” After
There are many reasons a patient should call the
giving one individual this advice, he switched to a new
Support Line. If you feel you need more information
about PH, need a shoulder to lean on, can’t seem to find doctor the same week we spoke on the phone!
anyone else to relate to, want fears to be taken away,
What’s your best advice for others living with PH?
need support, or encouragement … you should call!
There is hope. I believe the cure is around the
Maybe you are a family member who doesn’t understand
corner. Additionally, PHA has so many resources to offer
PH or why your loved one looks normal, but is actually
to help you as you live with PH. Join a support group! w
very sick … Call in!
“
”
Have you ever had a memorable experience on the
Support Line?
One time I was on the phone with an individual who
was a bishop of a Mormon church. He was a very nice
By Rita Orth, PH Patient, and Danica Sun, former PHA Volunteer
Services Intern
Patient-to-Patient Suppor t Line: 800-748-7274
34
s u pp o r t G r o u p s
W
hat do planting herbs, guided relaxation and identity
theft have in common? All were recent topics of
PH support group meetings! Many believe support
groups are “doom and gloom,” but it’s not true — they
provide outlets to relax, useful tips for living better and
more.
Little-known fact: yoga can be done on a chair.
It’s true! The Dallas PH Support Group received a
demonstration of “chair yoga.” Members learned
breathing and stretching techniques to help them improve
their health. Central Florida Support Group members
learned a little bit of yoga as well. The Inland Empire
PH Support Group which meets in Riverside, Calif.,
experienced “Guided Relaxation” and learned other ways
to reduce stress.
Put your feet up and let us help you with your
chores — your local support group might just be able
to help you find help around the house! The Southwest
Florida PH Support Group and the group in Mercer, Pa.,
brought special relationship managers and administrators
to teach members how to make their homes safer and
make housework easier to manage. You never know what
you’ll learn at a PH support group!
Do you know where your driver’s license is? The
Midlands/Palmetto, S.C., PH Support Group featured
a speaker from the local government’s Department of
Consumer Affairs to talk about identity theft!
Put your coffee mug down and read this: members
of the Brevard County, Fla., PH Support Group received
tips from a sleep disorder specialist about how they can
eat their way to a good night’s sleep. The Kentuckiana/
Louisville and Portland, Ore., PH Support Groups
featured speakers discussing ways to maintain an antiinflammatory, heart-healthy diet. Patients in Newark, N.J.,
dished about “food makeovers” — or how they can make
their favorite foods tasty with less salt and fat. Long
Island — Nassau, N.Y., PH Support Group members met
at Whole Foods and had a cooking demonstration and
tour of healthy food options (see photo on p. 37).
Imagine if a storm cut off your electricity or running
water; for a PH patient, advance preparation can make a
world of difference in managing health in an emergency.
Fortunately for patients in Port Charlotte, Fla., the
local EMS came to a meeting and spoke on hurricane
preparedness.
Ever heard of art for the heart? Crafting, drawing
and painting can be a good way to relax and de-stress.
The Cleveland, Ohio, PH Support Group hosted a special
meeting about bonding and self-expression through art.
The Philadelphia, University of PA Health System
PH Support Group is digging in the dirt! Members learned
about gardening during a recent meeting.
The Valley of the Sun (Phoenix, Ariz.) and Dallas
PHriends PH Support Groups brought medical experts to
discuss pain management.
I’ll take “Pulmonary Hypertension Trivia” for 500,
Alex! PH support groups took “Jeopardy” to a personal
level: several group leaders used game show-style trivia
with PH facts to educate and spice up their meetings.
Patients tested their PH knowledge at recent meetings
in Mid-Hudson Valley, N.Y., North Central Florida,
Jacksonville and Santa Barbara.
PHA welcomes first meetings of new groups: South
Jersey; Shreveport, La.; Springdale, Ark.; Binghamton,
N.Y.; Corpus Christi, Texas, and Flint/Saginaw, Mich.
PH groups in South Dakota have the distinction of
operating in one of the few states to have no PH clinics.
Their April meeting was the largest in their history;
30 came together, including five who were new to the
group. This turnout represents three times their regular
attendance. Cindy Schulz, the new support group coleader, attributes it to the interest in guest speaker Dr.
Kevin Vaska.
Dr. Deborah Levine spoke at the Eastern
Panhandle, W.Va., PH Support Group on improving
patient and medical professional relationships for better
healthcare.
Ft. Myers, Fla., PH Support Group Leader Bob
Hertz worked hard to set up his largest meeting to date,
bringing an international PH leader: Gerald Fischer, PHAEurope President. Patients around the region traveled
to this meeting, including the South Florida Latino PH
Support Group, which rented a shuttle to bring patients to
the meeting.
The Ft. Wayne, Ind., PH Support Group, was very
pleased to host Dr. Vallerie McLaughlin as its special
guest speaker. According to one patient, “Dr. McLaughlin
is the most awesome woman ever! If not for her, I’d
have died. She saved my life twice! She is always at the
forefront of new technology, medicines and techniques
for keeping us healthier longer.” w
ADVANCING THE CAUSE
T h e P HA Su p p o r t Group “S co o p ”
By Debbie Castro
PHA Director, Volunteer Services
35
ADVANCING THE CAUSE
Generation Hope Members Gather for F irst Meet-up
T
he first meet-up of Generation Hope members
took place on May 12 and was a smashing
success. After years of communicating online
through PHA’s Generation Hope email group, a
group for patients in their late teens, 20s and
30s, members met in person for the first time on
Broadway in New York City.
Eleven patients and three caregivers
traveled from near and far to participate, including
Connecticut, New York, New Jersey, Maryland and
Nebraska.
“The weekend allowed me to more easily
humanize an amazing set of cyber-friends ... to make
real and lasting connections with many who share
similar hopes and dreams and fears and struggles,”
says Joshua Griffis, PH patient and Generation Hope
Advisory Board member. “It was a weekend to be real,
to be raw, to be beautiful — a weekend to be forever
remembered. My only regret was that not everyone could
attend.”
The group was a powerhouse of leaders and
diverse patient populations: two male patients, two male
caregivers, six support group leaders, one Board member
and one celebrity patient (Kirsten Larson, who raised PH
awareness on Mystery Diagnosis, The Montel Show and
Who’s Wedding Is It Anyway?).
“For me, it was seeing everyone come together, the
excitement in their voices as they met for the first time
or saw each other after a long time had passed,” says
Colleen Brunetti, PH patient and PHA Board member.
“It was listening to the chatter around me and hearing
people connect not just about PH, but life in general.
It made all the work on Generation Hope the past few
years come alive and feel so worth it!”
The group had a late lunch at Ellen’s Stardust
Diner, spent time at a flea market in Times Square and
finished the night at a cafe. The conversation flowed
Generation Hope members meet in New York City
freely and occasionally included PH, with members
discussing birth control, pregnancy, exercise, diet and
healthy sleep habits. The group also discussed how to
find support when your family is in denial.
“I liked everything about the meeting. It was great
to get to meet PHers who were my age. I always feel like
I’m the youngest at my support group meetings, but here
everyone was just like me. It was so cool!” says Kiara
Tatum, PH patient and Generation Hope member. “I
loved singing along with the wait staff at Ellen’s Stardust
Diner, shopping with Alex Flipse, laughing and having a
fun time with everyone. It felt so good just to be there
and get to know everyone.”
To learn more about Generation Hope or to connect
with the Generation Hope email group, visit www.PHAssociation.org/GenerationHope w
By Debbie Castro
PHA Director, Volunteer Services
Find a Meeting Near You!
For more articles from Generation Hope,
check out the Generation Hope blog.
www.PHAssociation.org/GenerationHope/Blog
36
Check out the new support groups calendar! PHA
created a sortable, easy-to-use calendar that can help
you find support group meetings in your state and across
the country. Now it’s easier than ever to connect with
others living with PH. Visit www.PHAssociation.org/
SupportGroupCalendars/AllStates
Su ppor t Gr o u p s Make C o n n e ct i o n s A cr o s s t h e Co u n t r y
ADVANCING THE CAUSE
Who doesn’t love to eat and talk about food at the same
time? This past spring, the Nassau, N.Y., PH Support
Group met at Whole Foods in Jericho, N.Y., for a nutritional
luncheon and seminar. They got to enjoy some delicious
food while learning how to prepare healthy recipes!
Our PH doctors are hardworking, but they know how to
have fun and are very much a part of the PHamily! Dr.
Christopher Fiak (left) from Queen’s Medical Center in
Honolulu is “hanging loose” with Barbara Gamer, Hawaii’s
former support group leader, at a typical group meeting.
Are PH support groups fun? BINGO! The Charleston, W.Va.,
PH Support Group created a twist on traditional games like
Bingo and Scrabble — they used PH words and terminology
for their party. Members also enjoyed a picnic at this social
meeting.
The Springdale, Ark., Support Group met for the first time in
April. Through tears, one of the group members told Deloris
Peacy, the support group leader, “You really did help me.
I feel so much better after coming to this meeting.” The
group is small but powerful and PHA salutes it in its work!
Let’s not forget about PH nurses! Susan Tointon, RN, Mayo Clinic in Rochester, Minn., really loves her local support
group! She donated this banner to the Twin Cities, Minn., Support Group. Stephanie Layer, the support group leader,
says, “We really appreciate her kindness, and we will use this at every event. Thank you, Susan!”
37
ADVANCING THE CAUSE
special events
38
N o r t h Te x a s F u n Wa l k : G o i n g S t r o n g S i n c e 2 0 0 7
D
some friends of patients join us.
iane Dauwalder of Ft. Worth,
It has continued to grow each
Texas, and Marcia Beverly
year. At our fifth event, we wanted
of Dallas are proving that
to expand, so we added a 5K
combining forces for a common
PHun Run. We didn’t have much
cause can lead to spectacular
help, so we just did the best we
results. Not only are they PH
could. We had only 10 runners,
patients and support group
but that was 10 more than the
leaders in their respective
year before. This year we have
communities, but they have
a committee, with two members
co-chaired a PHA Special Event,
who are runners and are not sick,
the North Texas 5K Run and
so we are already off to a major
PHun Walk, now in its sixth
start. We had our first runner sign
year. We asked them to tell us
Diane Dauwalder (front) with friends Loretta and Miranda at the
finish line of the 4th annual North Texas PHun Walk in 2010.
up in April!
more about the event, which
takes place Nov. 3 this year. To read the full interview, visit
What has been the greatest key to the event’s success?
www.PHAssociation.org/SpecialEvents/NorthTexasWalk.
Diane: For the 5K race, because we are obviously not
runners and never organized a race, we had no clue what
What made you decide to host a PHA Special Event?
Diane: Like everyone else, it took forever for me to be we were doing. We hit a lot of dead ends and found out it
costs money for timing racers and tags. We learned a lot.
diagnosed; [I went to doctors in] three different states and
This year is very different and the big key to our
nobody knew what PH was. We needed to get the word out
success will be the efforts of two healthy people; one is
about PH so others would get diagnosed earlier.
a mom to a PH patient in our support group and the other
Marcia: I am co-leader for the Dallas Support Group
lost her dad to PH. These two people are helping us take
and we work together with the Ft. Worth group a few times
our event not just to the next level, but many levels up! We
a year. We wanted to do a fundraiser and this seemed the
also have very well-done sponsorship packets and have
easiest way. Our first PHun Walk was in 2007.
sites up on Active.com and Facebook, along with a PHA
How has the event grown over the years?
Support Group blog.
Diane: The first few years we had only patients and
Marcia: The growth is due to word of mouth and
their families. And there were not a lot of us in North
Firstgiving. It is so easy to set up your own web page on
Texas. Also, not all of us were able to participate due to
Firstgiving.com and let your friends and family know about
illness. But we still had fun. We did a $1 raffle of donated
the event. Having this wonderful committee with people
items and everyone was able to go home with a prize. Last
knowledgeable about 5K runs and sponsorship to help us
year we had about 150 in attendance and this year we are
and using a professional group for the 5K run has taken
looking at close to 500 people. We’ve gone from raising
this event to a whole new level. In fact, I think we skipped a
$3,000 our first year to $9,000, and this year we hope to
few levels and are greatly expanding.
double that. This year we are at our third park. We have
What has been the most difficult obstacle to overcome?
patients who live in that community, and that helps to get
Diane: Getting sponsors and media attention.
sponsors. Local businesses don’t want to be left out if
Previously we have done it all ourselves with help from
other businesses are participating.
family and friends. We sent out news releases and emails
Marcia: We started with just the two combined
to media but received no attention.
groups of Dallas and Ft. Worth. When we are combined,
Marcia: For me, personally, it has been the media
we call ourselves the North Texas PH Support Group. In
challenge. Local media has been zilch but that will change
the beginning, it was just patients and families, plus the
this year. I have worked for six years to get anything on
medical staff at our clinic. We had about 60 people. The
raffle was mostly garage sale-type items. We had a minimal TV or newspaper and met with no success. I suppose I
could have tried harder but it has been intimidating. I think
amount of food and asked people to bring a dish.
this year, with all the things we have going on and our
The next year we had about 100 people and had
special events in Photos
N.C. Cure PH Golf
Tournament
Location:
The Woodlands, Tex.
Location:
Mocksville, N.C.
Fun Fact: The annual
Woodlands, Tex.,
CrawPHish Festival is
by far PHA’s largest
special event, drawing
thousands. 2012’s
festival had the most
attendance yet, making
it the single largest
special event in PHA’s
history to date.
Fun Fact: Dr. Derek
Williams (pictured left
with event organizer
Cindy Pickles), Pediatric
Cardiologist at Wake Forest
University Baptist Medical
Center, spoke about the
significance of supporting
PH research through
events such as this golf
tournament. Attendees also enjoyed the new PHA Public Service
Announcements. Read more about these PSAs on p. 22.
ADVANCING THE CAUSE
The Woodlands
CrawPHish Festival
4th Annual Scramble for a Cure
Location: Las Vegas, Nev.
6th Annual Spur a Cure for PH
Fun Fact: This year’s crowd was the largest to date with
63 golfers and 85 participants at the luncheon! The event
included a helicopter ball drop. The winner is pictured here
with event organizer Jack Nino (second from left). PHA
Board Chair Laura D’Anna spoke during the luncheon.
Location: Phoenix, Ariz.
2nd Annual Walk 2 Cure PH: The Ellie Godina Memorial Walk
Stride to the Cure PHA 5K Run/Walk for a Cure
Location: Euclid, Ohio
Location: Chicago, Ill.
Fun Fact: More than 300 people gathered for this event,
which raised nearly $5,000 for PH research and programs
on the day of the event alone through donations and a raffle
featuring more than 40 gift baskets.
Fun Fact: This first-year event had more than 200 participants
representing 14 walk teams, and together they raised more
than $18,000 online alone!
Fun Fact: This year’s event featured guest speaker, Dr. Jeremy
Feldman, Director of the Pulmonary Hypertension Program
at Arizona Pulmonary Specialists, as well as a special guest
performance by Nashville recording artist Sheylyn Jaymes.
39
KS & RUN
AL
S
W
Friday, Sept. 14, and Saturday, Sept. 15, 2012
New England PH Forum &
Swinging for a Cure Golf Tournament
WHERE: Falmouth Country Club, Falmouth, Maine
DETAILS: Jeannette Morrill at 207-695-3042 or
[email protected]
Friday, Aug. 10, 2012
Messages of Hope — An Evening with Psychic
Medium Josephine Ghiringhelli
WHERE: Selden, N.Y.
DETAILS: Linda Sullivan at [email protected]
Sunday, Sept. 16, 2012
LKS & RUN
Colorado Pulmonary Hypertension Run forWAPHun
2012
S
WHERE: City Park, Denver, Colo.
DETAILS: Deb McCollister at [email protected] or Beth Coleman at [email protected] N E STEP CLOSER
TO
A CU
RE
PHA FUN
KS & RUN
AL
S
W
RE
A CU
RE
A CU
TO
PHA FUN
RE
A CU
TO
PHA FUN
TO
A CU
PHA FUN
TO
!
TO
A CU
RE
Saturday, Aug. 18, 2012
Saturday, Oct. 6, 2012
Central Coast PHun Walk for a Cure
9th Annual GA Fun Walk for a Cure
WHERE: East Cobb Park, Marietta, Ga.
WHERE: Chase Palm Park, Santa Barbara, Calif.
ER
R
S
O
O
N
DETAILS: Sally Maddox at [email protected]
DETAILS: Kelley Skumautz at
O N E S T E P C LO SE
E STEP CL
KS & RUN
L
A
[email protected] or Dana Sager at
S
W
[email protected]
8th Annual New York Fun Walk
WHERE: Fireman’s Memorial Park, Lindenhurst, N.Y.
Thursday, Aug. 30, 2012
R
DETAILS: Joanne Schmidt at 631-427-4586 or
PHA Night at Iron Pigs Stadium
[email protected]
WHERE: Allentown, Pa.
KS & RUN
AL
DETAILS: Joan Stevenson at [email protected] or
S
W
Gloria Hamm at [email protected]
KS & RUN
AL
Baltimore PH Walk for HOPE 2012
S
W
WHERE: M & T Bank Stadium, Baltimore, Md.
Saturday, Sept. 1, 2012
DETAILS: Janice Frederick at 410-328-7260 or O N E STEP CLOSER
Central Florida PHun Walk & 5K
[email protected]
WHERE: Lakeland, Fla.
R
E
DETAILS: Joy Morgan at [email protected]
or
O N E S T E P C LO S
For more Special Events listings, visit
863-646-4937
www.PHAssociation.org/Calendar
RE
KS & RUN
AL
S
W
PHA FUN
PHA FUN
TO
A CU
RE
Saturday, Aug. 4, 2012
CAPHS 6th Annual Walk and Roll
WHERE: Wadsworth Shelter at
R
Sandrun Metro Park, Akron, Ohio
DETAILS: Merle Reeseman at 724-458-5573 or [email protected]
PHA FUN
ADVANCING THE CAUSE
special events calendar 2012
Walk to Cure PH story continued from page 38
great committee, we will succeed in getting some media
attention. We have done this ourselves, and last year was
too much work for patients to do ourselves. In order to grow
we knew we needed more help, and now we have it.
Your event is support-group driven. How does that work?
Diane: Everyone pitches in. We ask all to be part
of the event committee, but not everyone is able to. We
just hope they all come to the event. We try to share
responsibilities so it is not too much for any one person.
Marcia: The support groups are the main participants
and they bring their family members. Some create their own
FirstGiving page and raise money in that way, and some
40
sell raffle tickets. We haven’t had any outside resources —
except for our drug reps — until this year.
What advice would you give to other event organizers?
Diane: Don’t get discouraged when starting out. Don’t
burn yourself out, either. Keep on talking, passing out fliers
everywhere: doctor offices, grocery stores, etc., and people
will begin to ask and inquire. If you only get one person to
learn about PH, you are a success.
Marcia: Start small with just your own group and
make it fun. It will grow every year. Use Firstgiving and
Facebook to your advantage. w
Interview conducted by Edward Freundl, PH Patient
community classroom
Thank You, Conference Volunteers, Speakers, Attendees and Supporters
O
n June 22-24, PHA hosted our 10th International PH
Conference and Scientific Sessions in Orlando, Fla. Our
Conference was a huge success and we would like to
thank everyone who worked tirelessly to make it happen.
From our Conference Planning Committee, which spent many
hours planning the fine details of the Conference, to our
on-site volunteers who helped carry out a variety of tasks —
we thank you! Your efforts made Conference such a special
experience for those in the PH community who attended.
PHA would also like to thank the many speakers and
presenters who helped educate many new — and veteran
— community members about pulmonary hypertension. Your
knowledge and personal experiences added educational
value to the many sessions that took place.
Last, but certainly not least, PHA thanks every patient,
family member, medical professional and friend who
attended this year’s Conference. Your enthusiastic spirit and
energy was an integral part of the success of Conference.
We hope to see you all in Indianapolis in 2014!
Don’t forget to look for the full recap of PHA’s 10th
International PH Conference and Scientific Sessions in the
fall 2012 issue of Pathlight. w
Save the Date!
PHA’s 11th International
PH Conference
and Scientific Sessions
June 20 – 22, 2014
JW Marriott Indianapolis
Indianapolis, Ind.
www.PHAssociation.org/Conference
PHA Extends a Huge Thank You
to Our Conference Sponsors!
Conference Recordings
Available Later this Year!
PHA thanks our corporate sponsors for helping to make
our 10th International PH Conference a huge success.
Missed PHA’s 10th International PH Conference and
Scientific Sessions? Enjoyed a session at Conference
and want to share it with a friend or family member
who wasn’t able to attend?
Diamond Sponsors
Actelion Pharmaceuticals US, Inc. • Pfizer, Inc. •
Gilead Sciences, Inc.
Gold Sponsor
Bayer HealthCare • United Therapeutics Corporation •
Novartis Pharmaceuticals
Silver Sponsor
Lung LLC
Bronze Sponsors
Accredo Health Group, Inc.
General Sponsors
CuraScript • CVS Caremark
For Patients and Caregivers:
Medically Led and Patient/Family Led Sessions will be
available on PHA Classroom.
www.PHAssociation.org/Classroom
For Medical Professionals:
PH Fundamentals and Scientific Sessions will be
available on PHA Online University.
Additionally, a selection of the recordings will be
offered for CME/CEU credits.
www.PHAOnlineUniv.org
PATHLIGHT SUMMER 2012 Stay tuned for more information!
41
communit y classroom
story continued from Page 1
is free, but registration is required. Space is limited so
early registration is strongly suggested. Registration is
open now, so don’t delay!
Visit www.PHAssociation.org/OnTheRoad for more
information. Questions regarding PHA on the Road can
be directed to Suzanne Flood at 301-565-3004 x768 or
[email protected].
We hope to see you “on the road” later this year! w
By Suzanne Flood
PHA Marketing & Communications Manager
ON THE
ROAD
PHA on the Road recognizes that YOU, the patient, are the heart of a larger PH community
that makes support, connection, information and education available to anyone who needs it.
These free patient-focused educational forums will feature interactive presentations, general
sessions, time to meet other patients and caregivers, and exhibits. Forum speakers are
leading PH medical professionals from the local area.
Join us “on the road” as we visit:
New Brunswick, N.J.
Chicago, Ill., Area
Saturday, Sept. 8, 2012
8:30 a.m. – 4:30 p.m.
Hyatt Regency New Brunswick
New Brunswick, N.J.
8:30 a.m. – 4:30 p.m.
The Stonegate Conference & Banquet Centre
Hoffman Estates, Ill.
Regional Chairs:
Harold Palevsky, MD
Regional Chairs:
Mardi Gomberg-Maitland, MD, MSc
Penn Presbyterian Medical Center, Philadelphia, Penn. (Co-Chair)
University of Chicago Medical Center, Chicago, Ill. (Co-Chair)
Sean Studer, MD
Roberto Machado, MD
Newark Beth Israel Medical Center, Newark, N.J. (Co-Chair)
University of Illinois–Chicago, Chicago, Ill. (Co-Chair)
Roxana Sulica, MD
Beth Israel Medical Center, New York, N.Y. (Co-Chair)
Session Topics to Include:
How is PAH Diagnosed? • Initial PAH Treatments • Long-term PAH Management • What Is on the Horizon for
PAH (Clinical Trials) • Eating Better • Pediatric PH – for Patients • Exercise and Yoga • PH and Connective Tissue
Disease • Understanding Transplant Options • Traveling with PH • Emergency Situations
Visit www.PHAssociation.org/OnTheRoad for more information and to register.
This is a FREE patient education event and registration is required.
Space is limited so early registration is strongly encouraged.
Questions? Contact [email protected] or 301-565-3004 x768.
42
PH Community Members: Find Free PH Education Online
PHA Classroom
e-Learning. Anytime.Riding
Anyplace.
the Wave to a Cure
www.PHAssociation.org/Classroom
PHA Classroom is PHA’s vibrant e-learning center
where patients and families can learn about PH through
live e-learning events and through one of the more than
140 recordings, including recordings from PHA’s 9th
International PH Conference and Scientific Sessions.
Live e-learning events are scheduled regularly, but don’t
worry if you can’t make an event! Event recordings are
posted to PHA Classroom shortly after each webinar.
PHA Online University is PHA’s premier
resource for medical professionals who want to
learn about screening, diagnosis and treatment
of pulmonary hypertension, including FREE CME/
CEU accredited courses, issues of Advances in
Pulmonary Hypertension, PHA’s quarterly medical
journal, and regular webinars.
Highlighted Recordings
• Life After Diagnosis: Staying Active with PH
• PH Treatments: What’s On the Horizon
• Peer-to-Peer Fundraising: Using Your Personal
Network to Increase Attendance and Funds for Your
Event
communit y classroom As a patient, family member or medical professional, you can access up-to-date information
on important PH topics. All you need is an Internet connection and you can get the latest in PH
education through these programs of PHA’s Medical Education Fund.
Highlighted Courses:
• Sarcoidosis-Associated Pulmonary
Hypertension (SAPH), Vivek N. Iyer, MD, MPH,
Mayo Clinic, Rochester, Minn.
• Congenital Heart Disease in PAH, Usha
Krishnan, MD, Columbia University, New York, N.Y.
Building Medical Education in PH
A Partnership Initiative to Advance Medical Understanding of Pulmonary H y p e r t e n s i o n
B
uilding Medical Education in PH events are designed to foster
partnerships between PHA and PH Centers to promote continuing
education in the field of pulmonary hypertension through CEU/CME
educational events.
Upcoming Events for Medical Professionals:
Pulmonary Vascular Disease and Right Ventricular Dysfunction:
Current Concepts and Future Therapies
Sept. 10 – 15, 2012
Keystone Symposia – Monterey, Calif.
Visit www.keystonesymposia.org for more information
10th Annual Update in Pulmonary Hypertension
Nov. 30, 2012
Tufts University School of Medicine and Tufts Medical Center —
Boston, Mass.
Visit www.ganesco.com for more information
To view a full list of education opportunities for medical professionals,
visit www.PHAOnlineUniv.org/Calendar
Medical Professionals: To partner with PHA
in Building Medical Education in PH
for your upcoming CME event, please
contact Suzanne Flood at
[email protected] or
301-565-3004 x768.
To learn more about this partnership, visit
www.PHAssociation.org/BME
43
communit y classroom
SAVE THE DATE!
2013 PH Professional Network Symposium
The Power of Teamwork:
10 Years of Professional Collaboration in PAH
September 26 – 28, 2013
Crystal Gateway Marriott — Arlington, Va.
PHA is pleased to present the 2013 PH Professional Network
Symposium, The Power of Teamwork: 10 Years of Professional
Collaboration in PAH, from Sept. 26-28, 2013, in Arlington, Va. The
PH Professional Network (PHPN) is PHA’s membership community
for nurses, nurse practitioners, physician assistants, pharmacists,
respiratory therapists and other allied health professionals
This educational program is designed for PH-treating allied
health professionals of varied experience and interests. Breakout
sessions will provide attendees the chance to choose individual
sessions based on their level of experience and interest.
Registration opens March 2013
For more information and the latest updates visit:
www.PHAssociation.org/PHPN/Symposium
Welcome, Rebecca Gifford,
Meeting Planning Associate!
As PHA’s Meeting Planning
Associate for Patient Programs,
Rebecca’s responsibilities
include providing logistical
support for several of PHA’s
events, including PHA’s
International PH Conferences
and Scientific Sessions, PHA on
the Road: PH Patients and Families Education Forums
and our Corporate Committee meetings. During
Conference years, she serves as the Scholarship
Committee staff liasion and helps coordinate all the
needs of the scholarship award recipients in order to
ensure a safe and successful time at Conference.
Rebecca is a 2010 graduate of York College
in Pennsylvania where she received a B.A. in Public
Relations and Marketing. Rebecca can be reached by
email at [email protected] or by phone at
301-565-3004 x764. w
44
Stay Informed
Throughout the Year
Keep up with the latest PH news
with headlines, events, educational
information and ways to get involved.
Subscribe to:
• PHA Daily Beat via email or RSS
• PHANews biweekly e-newsletter
• Or lots of other email lists and
RSS feeds
www.PHAssociation.org/News
phenomenal
youth
Camille Frede, Youth Editor
[email protected]
Interview with PH Patient
Taryn Petry
Interview conducted by Mira Kruger
PHA Pathlight Volunteer
Where do you live?
I live in Wisconsin.
How old are you?
I’m 8 years old.
When were you diagnosed?
My mom says I was diagnosed when I was 5 years old.
When did you first start having symptoms of pulmonary
hypertension?
I started having symptoms when I was 1 year old, but my mom says that
they didn’t recognize my symptoms until after I was diagnosed.
What were your symptoms?
I started having fainting spells when I was 1 year old that were caused by
PH. I also got tired really easily whenever I walked, but my parents thought
it was because I was little.
What activities do you like to do?
I like to read, play piano and do Irish dancing.
talk back!
Have you ever felt unable to do something because of PH?
Send your jokes,
How has your life changed since you’ve been diagnosed with PH?
This is your
space.
cartoons, drawings,
poems, questions,
comments or ideas for
I can’t run very much at the gym or during recess, and I also can’t play
basketball anymore.
I don’t remember not having PH, so I don’t know what would be different if
I didn’t have it.
future articles to Michal.
What is a message you’d like to pass on to other kids with PH?
She can be reached by
Remember to take your medicine because it makes you feel better. You
may not be able to run, but there are a lot of fun things you can still do!
phone at 301-565-3004
x800 or email at Kids@
PHAssociation.org.
45
PHENOMENAL YOUTH
B u l l y : “ A M o v i e T h a t K i d s a n d Te e n s N e e d t o S e e ”
B
ully, released in theaters March 2012,
children. No one from the school comes to
is a documentary that centers on five
help make it right.
kids ranging in age from 11 to 17 who
The movie ends with pictures and videos
have experienced bullying. As a PH patient
from candlelight vigils. The family of Tyler,
familiar with how bullying happens when
the 11-year-old who killed himself, started
people see you as different, I thought this
an organization called Stand for the Silent
movie was important to see and share with
and travels around the country speaking out
others.
against bullying and holding candlelight vigils
In the documentary, one boy suffers
in support of those who suffer from bullying.
every day on the school bus as kids poke
With bracelets that read “I am Somebody”
Becca Atherton
and punch him, and even sit on his face.
and shirts that say “I Stand for the Silent,”
A whole town turns against a young girl and her family
this organization is helping to raise awareness about the
when the news comes out that she is gay. Family friends
growing epidemic in our society.
who have known the girl for years refuse to even look at
On the movie’s website, www.thebullyproject.com,
her when she walks down the street. Another girl decides
you can check whether this eye-opening movie is playing
that the only way to protect herself from the bullying she
in a theater near you. (It is not yet playing in all major
is suffering from is to wave a gun in the bullies’ faces.
theaters.) While in some states it is rated PG-13 or
Although no shots are fired, she is sent to a juvenile
‘Unrated,’ it is a movie that kids and teens need to see.
detention center. Two families react to their sons’ suicides There is some strong language used; however, it helps
at ages 17 and 11 by trying to raise awareness of bullying
illustrate just what is going on in our schools.
in their schools.
Living with PH, I know firsthand that you can
The movie Bully takes a look at the school systems,
be bullied because of your illness. People may make
teachers and administrators who are supposed to keep
comments or tease you because you wear oxygen, have a
our children safe but fail to do so. Alex is teased on
pump or because you can’t walk up a flight of a stairs. But
the school bus every day. When his parents go to meet
I want to remind you that you are not alone. The whole PH
with the principal, they are told that the kids on that bus
community loves and cares about you. Find your strength
are “as good as gold.” Throughout the theater where I
from us to deal with whatever is thrown at you. We are
watched the movie, the audience scoffed at the principal’s
here for you. w
blindness and ignorance of the situation going on at her
By Becca Atherton, PH Patient
school. In another town, the parents of one of the boys
who committed suicide hold a town hall meeting and invite
Meet Becca and other teens who have PH at the police force and school officials. No one from the
www.PHATeens.ning.com. PHA Teens is a secure social
networking site for teens age 13-18 who have PH.
school comes to hear the concerns the town had for their
PH Word Morphs
A word morph is where you “morph” one word into another!
1.You can change only one letter at a time.
2.Each word you create has to be a real word.
Here’s a sample Word Morph: how do you get from Head
to Foot?
HEAD
BEAD
BEAT
BOAT
BOOT
FOOT
46
Try these two Word Morphs:
Beginner Level:
HEART
__________
__________
__________
BEATS
Intermediate Level:
HOPE
__________
__________
__________
__________
__________
CARE
Visit www.PHAssociation.org/PHKids for more!
Family PHocus
Helping Children with Pulmonary Hypertension Cope
W
hen a child is diagnosed with PH, families face a whole
new set of circumstances and challenges. Whether your
family has been living with PH for a few weeks or several
years, it’s normal to have lots of questions about raising a
child with a chronic illness and what you can do to help your
child cope. Read on for an excerpt adapted from PHA’s online
article, Helping Children with Pulmonary Hypertension Cope.
Appointments and Hospital Visits
Visits to the doctor’s office or hospital, whether routine or
not, can be difficult times for children of all ages. They may be
afraid of certain tests and procedures, anxious at the thought
of interacting with strangers, put off by the clinical atmosphere,
or worried about missing school or social activities.
Children have a tendency to feel anxious about the
unknown. If possible, prepare your son or daughter for
appointments and hospital visits in advance by describing
the appointment or procedure, who will be in the room, what
devices will be used, and how much your child will feel during
any tests or procedures. How much you tell your child and how
far in advance will depend on age and developmental stage.
One strategy is to wait the equivalent number of days before
an appointment as your child’s age in years (four days for a
4-year-old, two weeks for a 14-year-old), but this guideline will
vary from child to child. Talk to your PH team for ideas about
how to talk to your child about medical tests, as it’s likely they
have time-tested strategies for explaining complicated topics to
young patients. Some hospitals have pediatric social workers
and child life specialists who can help you prepare your child
for hospitalizations.
Unplanned visits to the hospital can be frightening for
both parent and child. You can reduce your own stress in these
situations by having an emergency plan ready and following it
when the time comes.
• Pack a bag of essentials to keep near your front door.
Include a change of clothing for each family member,
books and magazines, comfort objects for your child,
nonperishable snacks, $20 in cash for parking, and your
child’s medication list.
• Keep a supply of pre-made meals in your freezer and ask
two to three neighbors or family members to serve as “oncall babysitters” for your other children or pets if you need
to leave the house in a hurry.
• Children have a tendency to take cues from adults in
stressful situations. If you’re able to manage your own
tension and project a calm demeanor, your child will be
more likely to follow suit.
• On the trip to the hospital, pay close attention to
your child, responding to any questions with simple
and reassuring language. If possible, use distraction
techniques like singing or car games to take you child’s
mind off any pain or anxiety.
Once at the hospital, stay attentive to your child’s body
language for signs of discomfort. Keep in mind that it can be
difficult for young people to interact with adults they don’t
know. Children are sometimes embarrassed to ask nurses
for help. Explain that nurses spend time with other kids with
conditions like PH every day. Stay at your child’s side whenever
possible, and work with the doctor and nurse to explain
what’s happening to put your child at ease. You can actively
participate in your child’s care during a hospitalization by
staying overnight or helping in tasks such as washing. Honest
answers to questions such as “Will this hurt?” help build trust
between parent and child and may help to remove the fear of
the unknown.
Many parents also try to ease the anxiety their children
feel around appointments and procedures by concentrating
on the positive. You might focus conversation on how great
it will be to feel better after surgery, or all the visitors and
games there are to look forward to during a hospital stay.
PH patient Hannah, now in her 20s, fondly remembers her
parents’ strategy for relieving her hospital-related stress. After
blood draws, IVs, PICC lines and heart caths, she would always
receive a small gift. She told us, “I wasn’t spoiled … I never
got money for good grades, but that was something simple that
my parents did to keep my mind off the pain. To this day I often
go get an ice cream after a less-than-fun doctor’s visit.” w
Read the full article at: www.PHAssociation.org/Parents/
HelpingPHKidsCope
PHA is thankful to Michele Calderbank, Pulmonary
Hypertension Coordinator at Children’s Hospital, Colorado, for
her input and medical review, and to the parents and children
who shared their experiences to make this resource possible.
47
Passages is PHA’s way of honoring those who have lost their battle with PH, as it has been since the very first Pathlight
was published in May 1990. As we learn of patients’ passing, we inform the PH community. PHA extends sympathy to
the families and friends of those who are gone but not forgotten; each Pathlight is dedicated to their memory.
Dr. Thomas Albertson
Selena Auston
Margaret Mary Bateridge
Raymond Bills
Alexandria Beeson
Barbara Berg
Carol Ann Braden
Stephen Buccol
Dianne Call
Merle Childers
Eugene Francis Ciocon
Karen D’Angelo
Victor Gerard DiLeo
Paul-Michel Di Paolo
Theron Dye
Paul Leo “Papa” Fischer
Gerald P. Forest
Amy Frazier
Carolyn Gray
Debbie Paige Cooper Greer
Estelle Guillcatanda
William Hagzan
Erika Hall
Colleen Holbert
Janet Mary Hollins
Connie Alyene Howell
Lewis Jenkins
Wayne Kowalski
Marilyn L. Larkin
Ellen Joyce Larson
Jeanette Matlock
Julie Meyer
Sarah Moe
Connie Jo Moss
Billie Jean Murtagh
Dana O’Hara
Julia Rich
Jim Robins
Janet Faye Rurup
Mildred Saunders
Lawrence Schmidt
Ann Janet Simpson
Jessica Steckly
Janice Stewart
MaryAnna Struttmann
Frances Thurber Talmadge
Sandy Vandiver
Kathy Weaver
The accuracy of this list is very important to us. Please contact the PHA office at 301-565-3004 x800 or
[email protected] to have a recently deceased loved one’s name listed in Passages or to report errors or omissions.
For those for whom it would be helpful, PHA has developed a resource, Mourning a Loved One: A Guide to Grieving, which is available at
www.PHAssociation.org/Caregivers/Bereavement. For more information, or to request a print version of this guide, please contact
[email protected] or 301-565-3004 x800. We welcome all loved ones to remain a part of our community for as long as it is beneficial.
In memory of
DONATIONS LISTED WERE RECEIVED Between March 1, 2012, and May 31, 2012.
PHA IS DEEPLY GRATEFUL TO THE PH COMMUNITY FOR ITS EXTRAORDINARY SUPPORT.
Take a Look! Sustainers Circle Members Recognized 
PHA recognizes members of our Sustainers Circle in the donations lists. Look for a  symbol to see who
has made a sustained commitment to donate to PHA on a monthly basis. If you are not a member of our
Sustainers Circle but are interested in joining, visit www.PHAssociation.org/Donate/SustainersCircle or call Ellen
Leoni at 301-565-3004 x756. You may also use the remittance envelope enclosed in this issue of Pathlight.
Lynnda Abels
Ms. Sherry Veldhuizen
Thomas Albertson
Mr. and Mrs. David Critten
Monica G. Allen
Mr. Andrew A. Marino and Mrs. Megan
T. Allen
Mr. Peter Marino 
Mr. and Mrs. Jack J. Marino 
Mr. and Mrs. Ronald G. Robinson 
Mrs. Libby Zucker
Jere Allman
Ms. Mary K. Gray
Juanita Anderson
Mrs. Tammy Chapman
Eileen Arneson
Ms. Joanne Grego
Christiana Atsu
Ms. Joyce Nenonene
Selena Austin
Mrs. Nichole Renschler
48
Janice B. Ayers
Mr. Douglas R. Taylor
Joyce Bame
Mrs. Karen J. Bame
Dorothy M. Barry
Mr. and Mrs. Justin Ruel
Alexandria Beeson
Ultimate Sports Pizza
CDF Firefighters San Diego Chapter
CDF Firefighters Auxiliary
Mrs. Amanda Avina
Mrs. Barbara Barcinas
Ms. Alma Jean Beeson
Carol and Jim Bouchard
Ms. Aleene Colvin
Mrs. Dawn Craft
Ms. Kimberly M. Crutchfield
Mr. Steve Curley
Mrs. Randi Economy
Mr. Eugene Fowler
Mr. Paul Gaier
Ms. Barbara Jean Gasparian
Mrs. Carrie Gouvion
Mr. William Hagemann
Mr. and Mrs. Mike Heitmiller
Mrs. Cheryl Hudson
Miss Rachel Hurtado
Mr. and Mrs. Steve Kazarian
Mrs. Stefanie Laybourne
Mr. Justin McGough
Ms. Carol Murphy
Mrs. Jennifer Pahoa
Mrs. Lesley Price
Arthur and Ogen Savoian
Mr. and Mrs. Roland Shook
Mr. and Mrs. Dean Veik
Ben Willis, Joanne Evans, Jean
Kilkpatrick and Jacob & Elena
Gipson
Hope C. Bennett
Lisa W. Wheeler, MT 
Florence Bentzel
Palmyra Senior Program
Ms. Deborah Bentzel
Mr. and Mrs. Dennis Bentzel
Ms. Mary Jane Cedarface
Ms. Ruth F. Elton
Helen and William Hagan
Ms. Marva E. Jones
Mr. Jeffrey Jones
Ms. Mary Paolini
Mrs. Nancy B. Thomas
Miss Shannon White
Ms. Barbara H. Wieland
Mrs. Rebecca Youngblood
Sarah Berg
Jack & Barbara Glick Wiener
Ralph E. Bergl
Mr. Peter Petriccione
Dorothy I. Berube
Mr. Roland J. Berube
Gloria Biesemeyer
Ms. Kami Biesemeyer 
Renee M. Birt
Ms. Nanette K. Higgins
Wendy S. Bockhorst
Ms. Lee Billington
Mr. William Bockhorst
Carol Braden
Roger and Elsa Bermingham
Coy and Hazel Bradford
Ms. Gerrie Brittin
Lige and Linda Deaton
Ms. Joyce Endres
Ms. Jean Fulton
Ms. Shelley Paget
Ms. Pamela Parker
Ms. Crista Peters
Mr. Jeff Peterson
Ms. Ana Quezada
Ms. Holly Ragsdale
Ms. Lisa Ramsey
Ms. Bonnie Roemlein
Ms. Kim Ryan
Mrs. Anette Schaller
Ms. Judi Sepulveda
Ms. Amy Shamburg
Ms. Marissa Shorts
Ms. Treva Sidel
Mr. Chris Simmons
Mr. Gary Smith
Mr. Gary Stell, Jr.
Mr. Matt Sutter
Ms. Jane Tittle
Mr. Edgar Valenzuela
Ms. Emily Van Wormer
Mr. and Mrs. Steve Van Wormer
Mr. Greg Verheyen
Ms. Diane Viadero
Mr. Lee Vibber
Mr. Bruce Wanderer
Ms. Jennifer Westmore
Mrs. Karen Westmoreland
Ms. Rhonda Whittier
Ms. Debbie Wickersham
Mr. Kerry Wink
Ms. Beverly Young
Michelle A. Carr
Mr. Richard E. Carr
Dorothy Carslon
Mrs. Jean W. Wiltsey
Angelyn Casida
Col. Gary V. Casida 
Joseph Colantuone
Arrow Electronics, Inc.
Green Mountain Coffee Roasters, Inc.
Bill and Marilyn Barringer
Mr. John Colantuone
Mrs. Jeanne Dinardo
Ms. Christine Forti
Mr. and Mrs. James Godett
Mr. Stephen Gudek, Sr.
Mr. and Mrs. Peter M. Hadley
Mrs. Jody Lannan
Mr. Frances T. Lavita
Mr. and Mrs. Terence P. Magner
Mr. William McLaughlin
Ms. Susan O’Leary
Mrs. Karen A. Poor
Nancy and Generoso Scrima
Mrs. Diane G. Smith
Joan M. Cole
Mr. Paul M. Cole
Ryan Corr
Mr. and Mrs. Don Nicholson
DeNelle Correia
Mrs. Judy Ostendorff
Lillian D. Cosgro
Mr. Albert J. Ayan
Mr. and Mrs. Robert N. Cotton, Jr.
Bill and Clara Marsh
Mrs. Linda Neris
Mr. and Mrs. David Niitani
Ms. Florence Shea
Cindy Costantinou
Omaha Weavers & Spinners Guild
Debra A. Curran
Ms. Lorine Hughes 
Amy Curry
Mrs. Anita Williams
Joyce Dau
Mr. Bruce Dau
Maria DeMarco
Ms. Karen DeMarco
Paul-Michel P. Di Paolo
Members 1st Federal Credit Union
Ms. Shelly Blough
William and Janette Branson
Mr. Harold Hunt
Paul E. Vassil, MD
Terrance Dittmar
Mrs. Jeanne M. Woods
Christa L. Doose
Mr. Willy G. Lignau
Dolores Doria
Ms. Laura Doria-Djenfer 
Bonnie Dukart
Ms. Renee Chirtel
Gabriel M. Duque
Ms. Lee Billington
Mr. and Mrs. Gus Brown
Mrs. Gabriel M. Duque
Chad Ellenwood
David and Connie Sacherman
Allison Erb
Mrs. Heidi Baker 
Susan Eschbach
Mr. and Mrs. David Eschbach 
Mrs. Elizabeth Melady 
JoAnne R. Eshleman
Mr. Dallas O. Eshleman
Sherwood O. Farnham
Ms. Gina Barro
G. N. Farr
Mr. John McNally
Mrs. Mary Rozar
James F. Farrell
Joseph and Ann Farrell 
Horace and Kathleen Herzog
Tiffany M. Fasci
Mrs. Debra Testement 
Evaughn Figarelli
Mrs. Lynn Salisbury
Anne E. Fleenor
Mrs. Deborah H. Bell
Mrs. Mary I. Blubaugh
Ms. Shirley Brekken
Donald and Mary Karges
Ms. Ann R. Mitchim
Ms. Beverly Moore
Ms. Florine Mullins
Peggy and Bill Trieschmann
Kenneth Fleenor
Donald and Mary Karges
Kimberly A. Flinchum
Betty and J. R. Martin
Billy Floyd
Ms. Lisa Nichols
Blake G. Foucha
Mr. Jonathan Finger
Peggy L. Fox
Ms. Kimberly S. Croll
Pat Franklin
Mr. and Mrs. Ralph Troup
Barbara Franks
Mr. Anthony Amitrano
Mr. Andrew Arrowood
Mr. Jon Franks
Mr. and Mrs. Jeff Haggar
Mary and Vin Lisica
Mr. Dhananjay Patel
Mrs. Diane Shannon
Richard Franzen
PH Support Group: Puyallup Valley,
Washington
Tiffany L. Garza
Ms. Linette Connick 
Mary E. Geisdorf
Miss Phyllis Geisdorf 
Helen Glaser
Mr. Elton Glaser
Ellie Godina
Spiros E Gonakis CO, LPA
Iron Worker’s Local 17
Euclid Unit No. 343 American
Legion Auxiliary
Excelas, LLC
Today’s Lifestyle Construction, Inc.
Papp’s Body Shop, Inc.
Monreal Company Funeral Home
Euclid Firefighters Local 337
Premier Farnell Corp
Tim Nice MD. Inc.
Teamsters Local Union No. 407
Sons of American Legion
Bellini, Stefanek & Bonfiglio
Koumbaro’s Inc.
Weed Man Lake County
Euclid Post No. 343, Inc. The
American Legion
UPS Foundation, Inc.
Cardinal Community
Gordon Food Service
Mr. Steve Adams
Ms. Gayle Adams
Mrs. Heather Andrasak
Mrs. Mary Bailey
Mr. Joshua Bailey
Mrs. Tracy M. Ball
Mrs. Bernadette Banas
Mrs. Suzanne D. Bartolotta
PATHLIGHT SUMMER 2012 Ms. Rebecca Bennett
Mrs. Linda Bergoc
Ms. Tina Bolon
Mrs. Mary S. Bouffard
Mr. John Boustani
Ms. Paticia Brennan
Ms. Joanne Bryant
Mrs. Christine L. Burlison
Mrs. Kelly A. Butara
Miss Allyce Butara
Mrs. Connie Capuozzo
Mrs. Christin Carroll
Mrs. Mary E. Carter
Mrs. Dawn Marie Chinchar
Mr. Jeff Clarke
Mrs. Melissa Clarke-Godina
Mrs. Donna Clinton
Ms. Hope Cloud
Mr. Kevin Cool
Mrs. Katie Corbett
Mrs. Helma U. Crahen
Mr. Paul Crahen
Ms. Laura C. Crotty
Mr. Millicent D. Cutwright
Mr. Bob De Stefanis
Dr. Barbara Dennis
Ms. Maureen DeVito
Ms. Dorothy Dezelon
Ms. Andrea Doczy-Saliba
Ms. Mary Jo Doley
Mrs. Erica Drew
Mrs. Mary Beth Filippo
Ms. Elizabeth Findura
Mrs. Lisa A. Flachbart
Mrs. Kathy Fleck
Ms. Christine Foster
Mrs. Judy Freedman
Mrs. Tamara M. Fulkerson
Mrs. Pamela Fynes
Mr. Chad Gady
Mrs. Karen M. Gainford
Mr. Robert F. Gambatese, Jr.
Mr. Lee Gardella
Mrs. Mary E. Geosano
Mr. Steve Getty
Dr. Cynthia Gherman
Mr. Stephen Gladstone
Mrs. Sylvia P. Gliebe
Mr. Robert A. Godina
Mr. Vincent Godina
Mrs. Kathleen A. Gonakis
Mrs. Angela Gonzalez
Mrs. Karen Greenway
Mrs. Karen M. Greulich
Mrs. Margaret Gross
Mrs. Jean Hadney
Mrs. Mary A. Hadney
Ms. Lauren E. Hadney
Mrs. Susan M. Hamilton
Mrs. Eileen J. Hancovsky
Ms. Ruth Hans
Mark G. Hans, DDS
Ms. Therese Hazen
Ms. Jen Heikkila
Ms. Sharon Hensel
Mrs. Nancy D. Hetki
Mr. Ralph Higgins
Mr. Joel Hlavaty
Ms. Laura Hoag
Mrs. Chris A. Hoffman
Mrs. Linda M. Hoffmeister
Ms. Traci A. Hoke
Ms. Amelia A. Howard
Mr. Daniel Hudec
Mrs. Gayle Ice
Mrs. Christina Ice
Mrs. Maria Injic
Karl Jandrey, MD
Ms. Kelsey Jandrey
Mrs. Kathleen O. Jandrey
Ms. Colleen Jasinski
Ms. Nicole M. Johnson
Mrs. Mary Lou Jost
Mrs. Kris Kalinic
Mrs. Diane Kane
Mr. Robert Kaskolka
Mrs. Michelle Kavulich
Mr. Christopher Keim
Mrs. Carol Keller
Ms. Julie Kendall
Ms. Emily Kennedy
Mr. Daniel Kennedy
Ms. Caryl Kennedy
Miss Julia Kennedy
Mr. James Kennedy
DONATIONS : IN MEMORY OF
Ms. Beverly Goslin
Ms. Jeannie Hamady
Ms. Ginny Jenkinson
Ms. Betty Klipp
Joe and Betty Mazzarella
Chuck and Mo Royal
Keith and Nancy Speiran
Ms. Etta Webb
John and Mary Winemiller
Dave and Marilyn Wisor
Jeanette Brant
Mr. Dennis M. Brant
Kelly L. Bratcher
PH Support Group: Louisville, KY
Myrville Brown
Mr. John W. Brown
Karen M. Burgholzer
Mrs. Margaret A. Augesen
Virginia Burrell
Mrs. Jennifer Johnson
Kenneth Butler
Ms. Caryl Lind
Jerry and Linda Peter
Mrs. Lesli Witte
Taylor R. Caffrey
St. Paul’s Lutheran Church
Mr. Roy Abel, Jr.
Ms. Shannon Adams
Mr. John Allen
Mr. Todd Allison
Ms. Nikki Bazela
Ms. Elizabeth Blanco
Ms. Debi Brooks
Ms. Kristine Brooks
Ms. Trisha Brunswig
Ms. Becky Bunch
Ms. Dana Cabbell
Ms. Deborah Calcaterra
Mr. Jim Calkins
Ms. Shelly Callahan
Ms. Elionay L. Caravajal
Mr. Ed Castaneda
Ms. Catherine Chang
Ms. Kimberlee Cobb
Mr. Derrick Crider
Mrs. Suzanne A. Crider
Ms. Laura Curfman
Mr. Scott Daniel
Ms. Denise Dorin
Mr. Stanley Douglas
Mr. Andre Dumaine
Ms. Kelly Ehrsam
Ms. Annette Ekelius-Chow
Mr. Maxwell Ellington
Ms. Rosalena Evans
Ms. Pat Evert
Mr. John Ewonce
Mr. Joseph Fairchild
Ms. Annette Florez
Ms. Janet French
Ms. Kelly Furniss
Mr. Jesse Garcia
Ms. Michelle Gauci
Ms. Marla Gerger
Ms. Tracy Gooch
Ms. Joyce Greenway
Ms. Erika Griggs
Ms. Hannah Gumbrecht
Ms. Frances Guyett
Ms. Karen Haddad
Mr. Richard Heim
Mr. Richard Henry
Ms. Valerie Holden
Ms. Linda Hoogendoorn
Ms. Anna Christi Khachatoorian
Ms. Kris Kratky
Mr. Cliff Krause
Mr. Robert Krohn
Mr. Doug Kuczaj
Ms. Ann Lake
Ms. Susan Leon
Ms. Gayle Lev
Ms. Cassie Lewis
Mr. Kurt Lieber
Mr. Bill Lodin
Mr. John Lucas
Mr. Frank Martinez
Ms. Janae Martinez
Mrs. Dione Martinez
Ms. Lara McKinley
Mr. Bill Milletary
Mr. Nathanael Minarik
Ms. Megan Morton
Mr. Charles Munson
Ms. Michelle O’Malley
Ms. Dawn Orlow Townsend
49
DONATIONS: IN MEMORY OF
50
Ms. Kathleen Kennick
Mrs. Karen Kilbane
Ms. Karen Kilkenney
Mr. Dennis Kleinsmith
Ms. Laura Koeth
Mrs. Denise M. Koman
Mr. Ted Kosir
Mr. John Kostelnik
Ms. Helen Krems
Ms. Gloria J. Krob
Ms. Bridgette A. Lang
Miss Sara Lanzola
Mr. David Lanzola
Miss Emily Lanzola
Margaret and David Lanzola
Ms. Deborah M. Larch
Mr. Frank Lawrence
Mrs. Justine M. Leinweber
Mrs. Maureen Lippert
Mrs. Nancy Lockard
Mrs. Catherine Loesch
Ms. Nora Loftus
Mr. RJ Lukacs
Mrs. Sara Lukacs
Ms. Linda Lupton
Mr. John T. Lusoski
Mrs. Ruby M. Macejko
Mrs. Melissa Macejko
Mr. Robert Mack
Ms. Laura Mack
Ms. Melinda M. Madej
Mr. Marc Malinowski
Mr. Timothy B. Marrie
Ms. Alice Martincic
Mrs. Holly K. Maurer
Mrs. Tamara McCartney
Mrs. Dawn M. McKinney
Mr. Mark E. McManus
Mr. Patrick McMullen
Ms. Susie Meaker
Mrs. Denise N. Merkuloff
Ms. Stephanie M. Meyers
Ms. Argie Michalos
Ms. Kathleen M. Miller
Ms. Amy C. Miller
Mr. Brock Miskimen
Ms. Sarah Mitchell
Mr. Robert Moran
Mr. Perry Morehouse
Mr. David Moushey
Mrs. Carole Munion
Mr. John J. Murphy
Mrs. Kelly A. Murphy
Mrs. Monica Nardy
Ms. Linda Nardy
Mr. Andrew Natale
Mrs. Marianne Nicolli
Mr. Greg Norris
Ms. Erin E. Norton
Mrs. Laurie F. Nosse
Ms. Kimberly A. Novak
Mr. Charles J. Nusbaum
Mrs. Lynette O’Donnell
Mr. John O’Donnell
Mrs. Mary Kay O’Donnell
Mrs. Barbara Ottman
Mrs. Mary B. Paoloni
Mr. Mike Paoloni
Mrs. Maureen E. Payton
Ms. Jeanne Peterson
Ms. Robin Petrowski
Mr. John A. Petti
Ms. Johanna Pokar
Mr. Brandon Pool
Mrs. Judy Praskavich
Mr. Brian Provorse
Mr. Tommy Puklavec
Mr. Jeff J. Radachy
Ms. Anita Rajic
Mrs. Andrea Reynolds
Mrs. Joann Ribich
Ms. Karen Rossman
Ms. Kathy Rupp
Ms. Sandra Samaha
Ms. Jacquelyn Saroukhan
Ms. Madeline Scarniench
Mr. Robert Schilling
Ms. Kristen Schimmelman
Ms. Susan Schimmelman
Ms. Pamela Schlessel
Mrs. Mary J. Schulz
Mr. Halligan Sean
Ms. Barbara Sexton-Perez
Mrs. Nicole Sharp
Ms. Inna Shelley
Ms. Lindsey Siegler
Ms. Louise Silvestro
Ms. Dana Silvestro
Ms. Lori Silvestro
Mrs. Cynthia L. Skeel
Ms. Rosemarie Skladany
Mr. Dale Smith
Mrs. Olivia Southam
Mrs. Michelle A. Stachnik
Mrs. Alissa Stedronsky
Mrs. Deana Stinchcomb
Ms. Monica Swint
Ms. Michelle Sztul
Mr. John Tramsak
Ms. Kimberly Trappe
Mr. Bob Troop
Mrs. Donna Tulley
Mrs. Jane Van Valkenburgh
Mrs. Michele N. VanHimbergen
Mr. David Vonmeyer
Ms. Elizabeth Vonmeyer
Mr. David Wagner
Ms. Amanda Wagner
Mrs. Tara Walton
Mrs. Cathy Watt
Ms. Therese M. Webb
Ms. Marilyn L. Werner
Ms. Kristen Whelan
Ms. Patricia A. Wolanski
Ms. Karen Wolf
Mrs. Karen Wolf
Ms. Desiree Worthing
Ms. Joyce A. Wright
Mrs. Al Yovanno
Ms. Alison M. Zahler
Ms. Lauren Zbiegien
Barbara B. Goodin
Mr. Carl Goodin, Sr.
Ms. Mary Ann Gordon
James P. Gordon
Mrs. Gail Gordon
Anne Gottbrath
Mr. John Gottbrath
Roberta Granai
Mrs. Louise A. Conforti
Carolyn Gray
Cleaves Law Firm, PLLC
Ruth Greenspan
Mr. Edward Greenspan
Jennifer R. Grote
Mr. Chad Grote
Mackenzie Grubich
Uncle Johns Cider Mill, Inc.
Blue Cross Blue Shield
Knight Pets
Michigan Running Foundation
Sirrine & Associates, Inc.
Die Co.
Livingston County Gymnastics, LLC
Hafke Legal Services, P.C.
Mr. Ron L. Alleman
Mr. Martin P. Alward
Mr. Michael Anderson
Mrs. N. A. Anderson
Mr. Corey B. Baker
Ms. Casey Bergman
Mrs. Elizabeth A. Bethard
Mrs. Tameka Billingslea
Mrs. Kathy Jo Boak
Mrs. Anita Boyer
Ms. Evelyn Braun
Mr. Dale R. Bridgford
Mrs. Jennifer Brooks
Mrs. Kelly L. Brown
Mrs. Karen M. Brown
Mr. Mark A. Bush
Ms. Jeri M. Calabrese
Ms. Monica Carriedo
Dr. Rachel Christensen
Mrs. Tiffany Cleaver
Ms. Glenda K. Dean
Ms. Dianne K. Deans
Mr. William Denison
Douglas and Staci Dietzel
Ms. Margaret Dionise
Ms. Dawn R. Dodds
Ms. Ramona Dombrowski
Ms. Jacqueline Dombrowski
Ms. Cheryl S. Dunham
Mrs. Linda S. Dykstra
Mr. Michael J. Eacker
Mrs. Kathleen Eiferle
Ms. Wendy Elliott
Mrs. Kathleen C. Enos
Mr. Nick Ferrante
Mrs. Pamela W. Fink
Ms. Melinda Grubich
Mr. Dwight D. Handspike
Mrs. Katrina K. Hawley
Mrs. Laura Heinritz
Ms. Jayne Hoxie
Dr. Laura Hudy
Mr. David A. Hunsaker
Mrs. Susan A. Jensen
Mrs. Kelli A. Johnson
Mrs. Camille Jones
Mrs. Kristin Kless
Mr. Jay D. Knapp
Mrs. Karie S. Kusnier
Mrs. Kristyn L. Ladd
Mrs. Christiane M. Lancaster
Ms. Jennifer Lane
Ms. Denise Lator
Ms. Ann M. Leidlein
Ms. Renee Lelan
Mrs. Beverly Lipmyer
Dr. Thomas Livermore
Mrs. Trenda Loucks
Ms. Nicole R. Lutes
Mrs. Nichole A. Martinson
Mrs. Jody Masterson
Ms. Marcy Matson
Ms. Marcy R. Matson-Herrington
Mrs. Nancy McDowell
Mrs. Heather M. McKay
Mrs. Megan R. Merrill
Helen and Daniel Mills
Mr. Joe Mullaney
Mrs. Sarah Nash
Ms. Angela J. Oesterle
Mr. Daniel Pendell
Ms. Lori Phillips
Mr. Brian Polega
Mr. James M. Pratt
Mr. Michael A. Racine
Mrs. Erika Reagan
Mrs. Abigail L. Reynolds
Mrs. Suzanne E. Rodolico
Ms. Jacquelyn L. Rokos
Mr. Steve Rummel
Mr. Jack R. Rummell
Ms. Geraldine Sampier
Calvin and Marilyn Schneider
Mrs. Lynda Schoonver
Mrs. Bethany A. Scutt
Mr. Jeffrey R. Shank
Ms. Kendra A. Sokol
Mr. David Soltow
Ms. Deborah Spagnuolo
Mrs. Lisa M. Spees
Mrs. Diane C. Spink
Ms. Dorothy Spink
Ms. Sharon E. Taggart
Mark and Kellie Terry
Ms. Laureen K. Thornhill
Mrs. Suzanne Unruh
Mrs. Karenn F. Vernagus
Mrs. Christy N. Vostrizansky
Mrs. Theresa R. Walter
Mrs. Amy N. Watson
Ms. Sarah J. Wescott
Mrs. Joann K. West
Mr. Michael S. Wilcox
Ms. Kathleen A. Wilson
Mr. Terry Wood
Mr. John Wood
Ms. Kara Yermak
William C. Hagzan
Ms. Valerie J. Dalessio
Mr. Edgar Northrup and Mrs. Patricia
Green
Ms. Emma Hoey
Charles and Carol Horne
Ms. Dolores Janes
Marlene and Thomas Lehmann
Mary and David Mathis
Patricia and Charles Morrow
Mrs. Josephine H. Perry
Peggy and Bob Turner
Taylor Harrington
Mrs. Katharine Tanner
Julie Hendry
Ed and Judy Simpson
Karin M. Herring
Mr. George D. Herring
Mima Hessel
Mr. Gary N. Hessel 
Meaghan Hicks
Michael and Cathie Baker 
Mallory Hicks
Mr. Peter Tatikian 
Kirt Higgins
Mrs. Marie Higgins
Judy Marie K. Hockett
Mrs. Heidi Baker 
Vivian J. Hoff
Mr. William A. Hoff
Caroline Hoffert
Mr. Emil R. Hoffert
The Check-It-Out Sunday School Class
Mrs. Augusta Gammon
Mr. Raymond B. Rutherford
Mary S. Holden
Mrs. Carol Bean
Mrs. Heather Kirkland
Lois and Bill Manee
Andrew and Leslie Shull
Thomas W. Holloway
Ms. Laura Long
Nancy C. Horrocks
Mr. Richard L. Horrocks
Rachel Hoyt
Mr. and Mrs. Brian P. Barrow
Joy Beckmann, RN, MSN
Ms. Monica Blair
Ms. Deb Bourbeau
Ms. Catherine Cannady
Mrs. Berna Cliffe
Ms. Dana D. Conley
Mr. and Mrs. Leo A. Damren
Laura Hoyt D’Anna, DrPH 
Ms. Mara Friedman
Ms. Lynne Fujimoto
Mrs. Bernice L. Gant
Lt. Col. and Mrs. Carl Hicks, Jr.
Mr. and Mrs. Lee Hoyt 
Mrs. Kristin Hubbard
Mr. Shlomit Levy
Ms. Karen A. Lichtenberg
Ms. Christine A. McCreary
John and Ellena O’Toole
Dr. and Mrs. Ronald J. Oudiz
Ms. Karen Rochford
Harry and Diane Rozakis 
Ms. Maggi Scharf
Mrs. Jennifer Shih
April Hughes
Mrs. Constance Clemmons
Annette C. Hulsey
Ms. Jackie H. Brown 
Jack Jackson
Guy and Joanne Carpenter
Kelley Jones
Ms. Cary Adams
Mr. Andrew Brock
Miss Mary Ellen Clark
Ms. Tamika Dixon
Ms. Lisa Fogle
Ms. Evelyn Hernandez
Mr. Robert Hunter
Ms. Dara Johnson
Mrs. Jennifer Johnson
Ms. Tamika Jones
Mrs. Susan Karlic
Mrs. Janine R. Khalil
Mr. Travis Kramer
Mr. Colin McShane
Mr. Onye O
Ms. Debra O’Hehir
Mr. Jerry Patterson
Mr. Regi Philip
Mrs. Yolanda Smalls
Mr. Daniel Stalter
Miss Anna Toonk
Mr. Billy Vanel
James Justin
Mr. David P. Justin
Marlene J. Kersman
Ms. Deborah A. Kersman
Anne E. Kimmerly
Mr. Robert Davies
Ms. Emily Eblen
Mr. Jay Miranda
Ms. Shelley Reid
Kenneth A. Kish
Mrs. Marie Kish 
Alice N. Klucsarits
Ms. Ann C. Fitzgerald
Lois J. Koch
Mr. Richard C. Koch 
Tani K. Koppelman
Cynthia and Frank Koppelman 
Mr. and Mrs. Ronald A. Zach, Jr.
Leila Korzeniowski
Mr. Martin P. Korzeniowski
Ms. Agnes D. Roque
Ms. Marguerite Rudolph
Mrs. Elena Timko
Mr. Philip Zampiello
Heather Massey
John McInerney Insurance Agency Inc.
Stimson Enterprises, Inc.
Mr. Brendan Ahern
Mr. Paul D. Backe
Mr. Robert Becker
Mr. Dean A. Berndt
Mr. Bernard Bockhorst
Ms. Mary Bockhorst
Mr. Nicholas Bognar
Frank and Carol Bruno
Mr. Michael G. Chow
Mr. Shawn E. Connelly
Ms. Kathy Eckart
Mr. Scott E. Eckert
Mr. Jeffery Elmore
Mr. Jed Francese
Mr. Keith Francese
Mr. Frederick J. Gallegos
Ms. Jennifer L. Gannett
Mr. Jack Gillespie
Mr. Gandalf Hudow
Mr. Brian Hunt
Mr. Don Marcus Hurd
Mr. Karl P. Iskat
Mr. Rick Keller
Mr. Justin P. Larsen
Mr. Scott Lewis
Mr. Michael Mangahas
Mrs. Terese E. Martinez
Mrs. Anita Y. Mitchem
Marilyn I. Nolan, RN
Ms. Diane E. Okada
Mr. and Mrs. George Pantages
Mr. Gary Raczka
Carolyn E. Ritchie, RN, BSN
Julie A. Robin, RN, CPNS
Mrs. Anita Smith
Ms. Tina Stanberry
Mrs. G. M. Strong
Mrs. Jeane M. Szwarc
Mr. Bo Tachera
Mr. Robert Taggart
Mr. and Mrs. Terrance J. Ven Rooy
Ms. Judy C. Walker
Mr. Dan Yanez
Maribeth S. McCarthy
Ms. Jean Sheridan 
Charlene M. McElhinny
PH Support Group: Mercer Area
Michael McKenzie
Mrs. Margaret T. McKenzie
Gisela M. Meridith
Mr. Vincent Copeland
Mr. Jerry R. Meridith 
Florence K. Meyer
Mrs. Joan M. Connolly
Barbara A. Miller
Mr. Ronald P. Miller 
Gabrielle Miyara
Mr. and Mrs. Brian P. Barrow
Joy Beckmann, RN, MSN
Ms. Monica Blair
Ms. Deb Bourbeau
Ms. Dana D. Conley
Mr. and Mrs. Leo A. Damren
Ms. Mara Friedman
Ms. Lynne Fujimoto
Mrs. Bernice L. Gant
Lt. Col. and Mrs. Carl Hicks, Jr.
Mrs. Kristin Hubbard
Mr. Shlomit Levy
Ms. Karen A. Lichtenberg
Ms. Christine A. McCreary
Ms. Sallye M. Miyara
John and Ellena O’Toole
Ms. Karen Rochford
Ms. Maggi Scharf
Sarah F. Moe
Carolyn and Keith Hodgin
Teresa Howell and Irene Taylor
Ms. Barbara M. Levers
Mr. Russell Moe
Ms. Gloria A. Paulus
Ms. Linda J. Rast
Caroline J. Morgan
Mrs. Mary M. Joy
Margaret Motovidlak
Guy and Joanne Carpenter
Marjorie D. Mott
Mott Charitable Trust
Charles Mott
Mrs. Nadine Zemon
Kevin J. Mueller
Ms. Christina Mueller
Ernie Nafpliotis
Mr. Marc Adams
Mr. Robert Anderson
Mrs. Terri Chaseley
Mrs. Charna Grais
Mr. Richard Irwin
Ms. Jaynellyn Kilgallon
Mr. Russell Koontz
Mrs. Nancy Koran
Dr. Nicole Maiden
Mrs. Kelly Malikowski
Mr. Scott Marsell
Mr. Vincent Romano
Ms. Lynn Schroeder
Eileen A. Neal
Ms. Barbara J. Chase
Bill and Diane Henry
Mr. and Mrs. Joseph S. Nunes
Christopher Nelson
Ms. Julie Dahlgren
Mr. Richard Ohnemus
Melvin Newman
Mrs. Shirley Newman
Florence Nielsen
Mr. and Mrs. Jerry Andresen
Mr. and Mrs. William Barrett
Alice and Don Burrell
Mr. and Mrs. Umberto DiPaolo
James and Gerry Emmel
Ms. Clarice Gorsegner
Mr. and Mrs. James M. Jackson
Ms. Sarah D. Jerome
Mr. Dennis Joyce
Ms. Jean Kovalik
Jan and Eric Skuldt
Mr. and Mrs. Roger L. Smith
Mr. and Mrs. Jerry Stockbridge
Virginia L. Noddin
Mr. Robert L. Noddin
Dana J. O’Hara
Dr. and Mrs. Frank Adamo
Mr. and Mrs. A. Christopher Cerino
Ms. Joann Colella
Mrs. Francesca D’Apolito-Viscardi
Mrs. Amy B. Ferrara
Mrs. Carina Gabriele
April and Al Hay
Ms. Rachel Hollywood
Mr. Brian Imbemba
Mrs. Jennifer Jansen
Mrs. Colleen A. Kerwan
Mr. Mickey Lambert
Mrs. Linda A. Lauria
Mr. and Mrs. Andrew J. Lestingi
Mr. Ronald Lingo
Mr. and Mrs. and Mrs. Felix Lista
Mrs. Sandra Milo Prisco
Mr. and Mrs. Howard J. J. O’Hara
Joanne and Kenneth Schmidt 
Mrs. Stephanie Tedone
Mr. Michael Tiberio
Joanne C. Olson
Mark Baldwin and Carla Olson 
Kipp Palmer
Mrs. Cherie Rowe
Jane L. Papp
Mr. James Papp
Helen M. Ponder
Mrs. Linda G. Grayson
Ms. Laura B. Owen
Kari Posekany
Barry Boilson, MD 
Anthony J. Puopolo
Mrs. Colleen Albano
Mr. Craig Castriano
Mr. Eric A. Dolinski
Mr. James S. Fraser
Mr. Matt Hughes
Mr. Brendan Hughes
Mr. John A. Jannino
Ms. Katharine Kasper
Mr. Thomas A. Kelliher
Ms. Eileen C. Kelly
Mr. Sean Kelly
Mr. David A. Michaud
Mr. John T. Murphy
Mr. Benjamin Pomeroy
PATHLIGHT SUMMER 2012 Mr. Daniel M. Puopolo
Ms. Maureen Richard
Mr. Brian Taranto
Mr. David A. Thornhill
James Regan
Mrs. Denise Regan
LaVerne Richter
Mr. Lyle Richter
Charlotte Rogers
Mrs. Kirsten L. McCallion
Margaret L. Roos
Mrs. Kathryn Manley
Donald J. Roscelli
Ms. Jane L. Thomas
Harold Rothblatt
Ms. Susan J. Miller
Jason Rozakis
Michael Ruotolo
Ms. Jo Ann Barbaro
Janet F. Rurup
Ms. Irene E. Mayland
Charles A. Sadler
Arthur J. Gallagher & Co.
Mrs. Phyllis Algrim
Mr. Joe Besenjak
Ms. Amy Bicknell
Ms. Dawnmarie Bravo
Ms. Kim Coursey
Mrs. Laura Petragallo
Mr. Doug Schneider
Mr. Greg Spizzirri
Mrs. Kristen Stern
Mrs. Karen Swichtenberg
Mr. Scott Vermillion
Mrs. Donna Wavra
Roxanne Saverino
Mark and Rebecca Adolay
Mr. Trent Appleby
Mrs. Jody L. Bleier
Ms. Lynda Doyle
Mr. and Mrs. Martin Wheeler
Mrs. Jean Ann Myers
Rosemarie Stahley, Nancy Story,
Joni Carroll, Becky Adolay,
Diana Law, Kathy Puntarelli and
Therese Andrews
Linda and James Stewart
Ms. Martha Whyeler
Laura A. Savo
Albert and Manuelita Arieta
Gwen E. Sayer
Elevations Credit Union
Ms. Linda G. English
Mr. and Mrs. Harvey R. Kauffman
Ms. Irene Sayer
Ms. Stacey Sayer
Mrs. Smiley Shulze
Ms. Connie Whitcomb
Mr. and Mrs. William Wilbanks
Tiffany A. Scalone
Andrew and Stella Aspromonte
Lucille Schilling
Mr. Fred Schilling
Kimberly A. Scott
Mr. Steven C. Scott
Kelly Seibert
Mr. and Mrs. Ronald A. Zach, Jr.
Daniel M. Sheridan
Ms. Jean D. Pitcher
Ms. Jean Sheridan 
Patricia Short
Christopher D. Spradley, MD
Marjorie Silbermann
Hilda Colvin and Sallie Goldberg
Ms. Mayumi Yamada-Lifton
Robert Soto
Ms. Diane Soto
Cindy Sprague
Mrs. Margaret A. Sprague
Diane Sprague
Elaine Squitieri
Mr. Andrew Squitieri
Patricia Stanchfield
Robert F. Stanchfield, MD
Bonnie D. Steadman
Mrs. Carol Dawson
Ms. Catherine Fugman
Ms. Julie Haynes
Ms. Jan Richter
Mr. Robert W. Steadman 
Mr. Tom Steadman
Mary T. Steele
Ms. Teresa M. Hoffman
DONATIONS: IN MEMORY OF
Wayne Kowalski
Central Vermont Community Action
Council Inc.
Northfield Savings Bank
Ms. Gerrie Brittin
Ms. Mona J. Hall
Mr. and Mrs. Michael J. Hambro
Ms. Linda J. Lambert
Mrs. Diane M. Patno
Mr. Thomas M. Salmon
Natalie Lapidus
Mr. Mark Lapidus 
Alice Leacock
Mr. John D. Leacock
Philip H. LeGrande
Mrs. Caroline Gregory
Sylvia Lerma
Mr. and Mrs. Michael Rivera
Shelley A. Lisbona
CustomInk.com
Lakeland National Honor Society
Ms. Carol Anderson
Mr. Kenneth W. Baumann
Mrs. Jackie Bolt
Ms. Kelsea Bolt
Mrs. Therese Boruta
Mrs. Maureen Braen
Mr. Matthew Brandt
Ms. Karen Bryan
Ms. Dorothy Bryan
Mrs. Juliet Bryan
Mr. Gregg Bryan
Miss Katherine Bryan
Mr. Robert Caruso
Ms. Jennifer Clauss
Ms. Nancy Comerford
Mr. Cory Cook
Mr. Michael Cricco
Ms. Laurie Emmons
Mrs. Peggy Ensslin
Mr. Chris Gagliano
Mrs. Lisa Gilgen
Mrs. Lynn Ann Hinchman
Mrs. Cynthia Jacobs
Mr. Roman Jezioro
Ms. Erin Kelley
Ms. Cheryl A. Kenney
Ms. Kathleen Kobe
Mrs. Andrea Lisbona
Mrs. Heather Lisbona
Mrs. Kathryn Marsico
Ms. Kathleen Nelson
Ms. Victoria Nelson
Mr. Craig Nicol
Mrs. Melissa O’Brien
Ms. Kathleen O’Keefe
Ms. Deanna Pecora
Ms. Renee Ploger
Ms. Mary Louise Rabadan
Mr. Malcolm Ramsamy
Mr. Robert Runde
Ms. Grace Schmidt
Ms. Emily Schmidt
Ms. Renee Sluszniak
Marcella Staropoli and family
Ms. Marcella Staropoli
Ms. Joy Urdang
Tim and Medea Valdez
Mrs. Kathy Verduin
Mr. Todd Ware
Mrs. Laura Wentz
Mrs. Phyllis Witmer
Mrs. Nicole Wohlrab
Mrs. Joanne Yankovich
Keith R. Lisonbee
Mrs. Judy H. Lisonbee
Melissa D. Lucero
Ms. Angela K. Harvey
Ms. Amy Wezorek
Annette S. Luebker
Mrs. Margaret Frick
Alice M. Majdecki
Mr. Jerome Majdecki
Monica Marino
Ms. Elizabeth N. Obert
James A. Martin
Stayhealthy, Inc.
Ms. Cynthia Lynn Araujo
Ms. Lisa Collins
Ms. Carolyn V. Cunningham
Mr. Ronald J. Danison
Mrs. Camilla Danison
Ms. Mary Dann-McNamee
Mrs. Belen Dorantes
Ms. Judith Garcia
Mrs. Susan L. Nuveman
51
DONATIONS: IN HONOR OF
Janice Stewart
Ms. Janice F. Howd
Nicolas Stikeleather
Larry and Ruth Ann Stikeleather
Angelique Stubbs
Mrs. Cheryl Eagy 
Mr. Timothy Hoskins
Ms. Jennifer Stubbs
Mary K. Stutzman
Mr. John W. Stutzman
Dee Summers
Ms. Marilyn J. Reed
Frances E. Thurber Talmadge
Ms. Lynn L. Stokke
Arnold J. Timm
Mr. and Mrs. Arnold H. Timm 
Helen Trevino
Mr. Frank L. Trevino
Joseph Tymczyszyn
Mrs. Gwen H. Tymczyszyn
Sandra Vandiver
Ms. Nancy L. Green
Mr. Wayne Jones
Mr. Richard B McLain
Ms. Pam Werner
Ernest J. Votto
Mrs. Suzanne H. Burleigh
Jerry Vrionis
Mrs. Eunice Canziani
Gloria V. Watson
Mrs. Melissa Silverman
Melissa Weymouth
PH Support Group: Treasure Valley (ID)
Ruth Wiernick
Ms. Rose Wiernick
Shirley L. Wilhite
Mr. Raymond A. Wilhite
Delaysia Williams
Ms. Miroshala Allison 
Charles F. Williams
Ms. Kelly F. Williams
Julian Willis
Michelle Calderbank, RN
Ms. JoAnne Willis
Ms. Mary T. Willis
Mrs. Lara Willis
Jerry Wojciechowski
Brandup
Nicholas E. Rose, MD, Inc.
Tomkinson & Associates, Inc.
Hill House Products
CuraScript
Mr. and Mrs. Paul Andersen
Ms. Amanda Arnall
Mr. Gregg Boehm
Ms. Kathleen M. Branigan
Mrs. Cheryl A. Brooks
Mr. Edward Brose
Mr. Robert Brown
Tim and Jan Calkins 
Mrs. Carol Ann Cann
Ms. Kathy Carr
Mr. Bud Chapin
Ms. Jana DeWitt
Ms. Aimee Frank
Ms. Cori Grosman
Mr. and Mrs. Virgil Gryskiewicz
Ms. Katherine Hill
Mrs. Asako U. Igawa 
Mr. and Mrs. Ted Iwanabe, Jr.
Mrs. Beth Jansen
Ms. Michelle Jenkins
Mr. Daniel Kelley 
Mrs. Suzanne F. Killings
Ms. Linda Kimble
Ms. Elina Kogan
Ms. Melissa Lam
Mrs. Janet S. Lisle
Ms. Joan Meucci
Ms. Kathryn Millsap
Ms. Kathryn Paradise
Mrs. Helen Parrott
Mr. and Mrs. Richard C. Pepin
Ms. Jessica Rankin
Ms. Andrea Rifenbark
Mrs. Gail J. Rucker
Ed and Judy Simpson
Mrs. Alice L. Smith
Ms. Ann Story
Ms. Peggy Van Essen
Ms. Alicia Vaz
Mr. Daniel Villalpando
Ms. Ira Waldman
Ms. Betty Lou Wojciechowski 
Ms. Debra Yamanoha
MatThew Wojciechowski
Brandup
Hill House Products
CuraScript
Ms. Amanda Arnall
Mr. Gregg Boehm
Mr. Edward Brose
Mr. Robert Brown
Mrs. Carol Ann Cann
Ms. Kathy Carr
Mr. Bud Chapin
Ms. Jana DeWitt
Ms. Aimee Frank
Ms. Cori Grosman
Ms. Katherine Hill
Mrs. Beth Jansen
Ms. Linda Kimble
Ms. Elina Kogan
Ms. Melissa Lam
Mrs. Janet S. Lisle
Ms. Joan Meucci
Ms. Kathryn Millsap
Mrs. Helen Parrott
Ms. Jessica Rankin
Mrs. Gail J. Rucker
Ed and Judy Simpson
Mrs. Alice L. Smith
Ms. Ann Story
Ms. Peggy Van Essen
Ms. Alicia Vaz
Ms. Ira Waldman
Ms. Debra Yamanoha
Michael Wojciechowski
Brandup
Hill House Products
CuraScript
Ms. Amanda Arnall
Mr. Gregg Boehm
Mr. Edward Brose
Mr. Robert Brown
Mrs. Carol Ann Cann
Ms. Kathy Carr
Mr. Bud Chapin
Ms. Jana DeWitt
Ms. Aimee Frank
Ms. Cori Grosman
Ms. Katherine Hill
Mrs. Beth Jansen
Ms. Linda Kimble
Ms. Elina Kogan
Ms. Melissa Lam
Mrs. Janet S. Lisle
Ms. Joan Meucci
Ms. Kathryn Millsap
Mrs. Helen Parrott
Ms. Jessica Rankin
Mrs. Gail J. Rucker
Ed and Judy Simpson
Mrs. Alice L. Smith
Ms. Ann Story
Ms. Peggy Van Essen
Ms. Alicia Vaz
Ms. Ira Waldman
Ms. Debra Yamanoha
Marilyn M. Woodruff
Kalamazoo Seventh-Day Adventist
Church
Sandy and Paul Beiter
Luella and Harm Doorlag
Ms. Joan Garnaat Dudeck
Mr. Randall O. Horneber
Mrs. Mary Jane Rantz
Mrs. Christina Salscheider
Ms. Cheryl Schreiber
Ms. Mary L. Sharp
Joshua A. York
Tony and Cara York
In honor of
DONATIONS LISTED WERE RECEIVED Between March 1, 2012, and MAY 31, 2012.
Rachel Abraham
Getco
Anna and Franco Muggia
Arnie and Roberta Ursaner
Rita Abraham
Anna and Franco Muggia
Pat Black
Mr. David Black
Nicole Blohm
Ms. Dolores M. Saunders
Denise Bradby
Mrs. Emily M. Bradby
Ruth Braun
Mr. R. John Braun 
Bailey Brewer
M + K Quality Motors, Inc.
Mr. David P. Riggins
Emily Broadhurst
Karen and Arthur Broadhurst 
Arthur and Virginia Broadhurst 
Ms. Kathleen Czachor 
Mr. Kevin Kondry 
Riley L. Buchanan
Mr. and Mrs. Thomas Myers 
Charles D. Burger
Mrs. Karen R. Verlander
Stella Butler-Rodriguez
Mr. Roland Miskimon
Debbie Castro
Ed and Judy Simpson
Colleen Connor
Ms. Lauren Murawski 
Paul Corris
Mr. James Edward Kirtland
52
Jack Curtis
Mr. Eric Bradford
Teresa A. Delorenzo
Ms. Susan Wagner
Sarah Donoughue
Mr. and Mrs. Timothy M.
Donoughue 
Camm Epstein
Shirley and Norman Epstein
Sherrie and Allan Turkheimer
Danielle Epstein
Mr. David Tolchin and Ms. Shira
E. Epstein 
Liam Epstein
Sam Epstein
Shira E. Epstein
Camm and Sue Epstein 
Shirley Epstein
Sue Epstein
Kimberly Farmer
Kimberlee Ford
Ms. Dedra Richardson
Priscilla C. Franz
Ms. Karen Franz 
Caroline R. Friedman
Mr. Eric P. Friedman 
Tammy Gilbert
Suzanne and Thomas Gilbert
Marcia L. Gilbertson
Mr. and Mrs. Joe Gilbertson 
Mary E. Gillam
Timothy and Debra Hoffman
Kathleen Grady
Mrs. Susan Marinac
Ryan Grann
Daren and Kerry Grann 
Tim and Deb Shelton 
Savanha Groebner
Mr. Ted Andrews
Mrs. Linda Bailey
Mrs. Jennifer Barnes
Mrs. Kathleen Bascom
Ms. Diane Chung-Hammer
Mrs. Judy Gillivan
Ms. Nicole Hotaling
Mr. Matthew Thornton
Mrs. Jeanine Wakefield
Jake Gunter
Women’s Clinic, Ltd
Mrs. Ellen Abramson
Mrs. Allison Althouse
Miss Sondos Alzurayer
Mr. Yoram Amihud
Mrs. Mindy Baker
Mrs. Diane Baldwin
Mr. Ben Bamberger
Ms. Harriet Baskin
Ms. Kate Berman
Mrs. Sharon Berman
Mrs. Kathleen Bernick
Miss Theresa Bernick
Mrs. Jean Blair
Dr. Patti Brown
Ivan Bub, MD
Ms. Gail Champlin
Mrs. Sheila Chestnov
Ms. Deborah Cooper
Mrs. Eleanor Damiano
Mr. Scott Davis
Mrs. Robin Drezner
Mrs. Lynn Driben
Ms. Cydney Engle
Miss Erin Estabrook
Mrs. Marcia Filstein
Ms. Sandra Fishman
Mrs. Janet Gensler
Ms. Sarah Godlove
Ms. Carol Greenberg
Mr. Andrew Guay
Mrs. Ellice Gunter
Mrs. Terri Halle
Brian Hanna, MD, PhD
Mr. Jim Harder
Mr. Richard Henry
Mrs. Elyse Horowitz
Ms. Solange Israel Mintz
Mr. Philip Jacobs
Dr. Eydie I. Kasendorf
Mrs. Betsy Katz
Ms. Nancy J. Knoblauch
Ms. Allison Knopf
Ms. Tammy L. Kramer
Mrs. Wendy Miller
Mrs. Ricki A. Tate
Maria Martuccio
Ms. Heather Logan
Ms. Lucia Martuccio 
Mrs. Erin C. Meyer
Mrs. Sharon Simmons
Eric Maxwell
Mrs. Robin M. Watson
Robert McCully
Mr. and Mrs. John A. Awood 
Sandra McEwen
Nelle McLaughlin
Mrs. Julie M. Houston
Mrs. Virginia Mancil
Stephanie and David Mancil
Mrs. Barbara McAllister
Ms. Louise McCook
Mrs. Kathleen McLaughlin
Mrs. Elizabeth Morton
Ms. Monica Perna
Ms. Sharon Reed
Ms. Teri L. Ryan
Ms. Judith L. Shrader
Samantha Mitchell
Ms. Elaine Siebke
Joy Morgan
Jon and Bopha Cobarrubias
Gordon R. Morris
Leslie and Robert Hudson
Amy L. Mullican
Derrik D. Neal
Cleal and Dexter Neal 
Betty B. O’Byrne
Mr. Daniel O’Byrne
Dorothy M. Olson
Mr. Andrew J. Horowitz
Rita Orth
Judy and Don Anderson
James H. Perry
Aon Foundation
Harrison, Bettis, Staff, McFarland &
Weems, L.L.P.
Jeffrey Ball, MD
Mr. James T. Barbuti
Ms. Laura Barnett
Mr. Mike Bell
Mr. James Braun
Mrs. Vicki L. Carlson
Ms. Dianna Cervantes
Mrs. Susan Cochran
Ms. Susan Cole
Ms. Tamara Cook
Mr. William Curcio
Mr. Robert Drew
Mrs. Maureen A. Dritsan
Mrs. Joann Goff
Mr. Daniel Goodman
Mr. Dale Hightower
Mr. Scott R. Hudson
Mrs. Vicki Johnston
Mr. Tim Kelly
Mr. Jerome M. Kruszka
Ms. Gail M. Lynch
Mrs. Wendy Mattson
Ms. Erin McPhee
Ms. Amy D. Meier
Ms. Amy T. Moseley
Ms. Betty Perry
Ms. Stella Raymaker
Ms. Cherie Rice
Ms. Anne Rogers
Mrs. Denise A. Schwegel
Mrs. Kathryn Shea
Ms. Linda Smith
Ms. Gwendolyn K. Smith
Mr. Gerard Sonnier
Mr. Bill Spence
Mrs. Courtney Tippy
Mr. Nathan Waldman
Ms. Leslie J. Watt
Mr. Theodore Williams
Mr. James Woods
Sarah Pette
Mr. John Ferebee
Amy Piazza
Ms. Erin Clark
Mrs. Melissa Clegg
Ms. Chrissie Kimble
Mrs. Jacqueline Lawson
Mrs. Angelique Lippmann
Ms. Jill Morris
Ms. Blanche Parks
Mrs. Amy Piazza
Mr. Brian Piazza
Mrs. Christine Piazza
Mrs. Jill Piazza
Ms. Gina Quartarone
Mrs. Silvana C. Schaeuble
Dr. Nicole Scheiman
Mrs. Sam Snowden
Ms. Nancy Stevens
Ms. Marlene Thomas
Ms. Andrea L. Thompson
Cynthia Pickles
Bishop Greco Columbiettes
Mr. Timothy C. Pickles 
Joseph A. Picone
Ms. Joamna A. Margarin
Puerto Rico PH Patients
Mrs. Carmen G. Lozada-Bruno 
Sonya L. Queen
Mrs. Sonya L. Queen
Arthur Raney
Mr. Darin E. Raney 
Delia Rivera
Mr. and Mrs. Michael Rivera
Ivan M. Robbins
Olivia Rodrigues
New Jersey State Firefighter’s Mutual
Benevolent Association
Unilever United States Foundation, Inc.
Mrs. Bernadette Alberta
Ms. Jennifer Amos
Mrs. Calla Andrus
Ms. Ana Baptista
Ms. Lori Bennett
Mrs. Michele Bergamotto
Mrs. Sharon Bojcik
Mrs. Maureen Braen
Mrs. Laura Casale
Ms. Stephanie Castellano
Mr. Michael Chamer
Mrs. Silvia Da Silva
Ms. Marian Decker
Ms. Kristin Decker
Mrs. Geralyn DeFabbio
Ms. Jill Glenn
Ms. Nicole Gorsky
Mr. Paul J. Hooker
Mr. Christopher Jordan
Mrs. Nancy Kowalski
Ms. Rebecca Kowalski
Mrs. Eva Kowalski
Mrs. Melanie J. Kozak
Ms. Colette Lattanzi
Miss Lauren Lattanzio
Mrs. Maureen M. Lehr
Mrs. Heather Lisbona
Ms. Susanne Martinez
Mr. John Migueis
Mr. John F. Ortman
Mrs. Telma Pereira
Ms. Carol Petrosino
Mr. Justin Roberts
Mr. Manny Rodrigues
Ms. Karen Ryder
Mrs. Laurie Santiago
Mr. Paulo Santos
Mr. Daniel Santos
Mr. Keith W. Sass
Mr. Steven Schneider
Mrs. Diana Shapiro
Mr. Mike Simkovich
Ms. Annie Stollmeyer
Ms. Cristina Teques
Mr. Gleb Zhgun
Fran Rogers
Mrs. Nelle McLaughlin
Sarah Rossi
Mrs. Eileen Carusona
Ms. Lisa M. Crowley
Mr. T.J. Dembski
Ms. Meghan Dembski
Mr. Matthew Faris
Mr. David Hall
Ms. Sally Ann Kelly
Mr. Adam Levy
Mr. Robert McKinlay
Ms. Dona Quinn
Ms. Amy Ross
Miss Sarah Rossi
Ms. Katherine Rossi
Mr. and Mrs. William S. Rossi
Mr. Austin Shoup
Mr. Jonathan Weichmann
Mrs. Connie Wells
PATHLIGHT SUMMER 2012 Jenesis Rothblatt
Ms. Susan J. Miller
Jeffrey S. Sager
Mr. William J. Wetter
My patients in Santa Barbara
County
Jeffrey S. Sager, MD, MSc 
Melinda Schissel
Ms. Mickie Vinson
Joanne Schmidt
Ignatius and Eleanor Iacono
John and Antoinette Sperando
Colleen M. Schnell
Mr. and Mrs. Brandon Mize
Twana Schulz
Mrs. Twana Schulz 
Mrs. Doris Thomas
Abby Sherwood
Mr. and Mrs. Mike H. Sherwood
Cordelia Skuldt
Mrs. Becky Cox
Ms. Julianna Cucci
Ms. Carol Demuth
Ms. Donna Hynek
Mr. Craig Kersemeier
Mrs. Alanna Lennon
Ms. Jackie Nesbitt
Ms. Juliet A. Skuldt
David and Lauren Willming
Robert Smith
Ms. Gail Philbrook
John R. Sperando
Ignatius and Eleanor Iacono
Jack Stibbs
C. Gregory Elliott, MD
Kellie E. Tasto
Mr. and Mrs. Joe Gilbertson 
Stephanie M. Terrell
Mr. Paul Terrell
Katherine Tobias
Mr. Dennis Belsky
Susan K. Tointon
Mr. and Mrs. John A. Awood 
Daniel Torres
Mr. and Mrs. Jose A. Narvaez
Kari Trapp
Miss Enih Tendo
Lorrie Tufano
Ms. Kathleen E. Fader
Sherrie L. Turkheimer
Harriet Turkheimer
Lucas Van Wormer
Brian and Karey Hamrick
Ms. Florence Henderson
Stella Violet
Ms. Dawn Butler 
Ms. Dianne K. Lancaster 
Steven Wachter
Esta and Randy Neugroschel
Shaye Wallace
Artistic Impression Studio
Chelsea Warnberg
Mr. Kevin Ario
Kenneth Wei
Mr. Craig Courtney
Celia L. Wiens
Mrs. Celia L. Wiens
Hunter Wilhelm
Ken and Carol Wilhelm
Mrs. Charlotte P. Wilhelm
David Williams
Marzano Asset Management, LLC
Deborah G. Wilson
Mr. and Mrs. Jim P. Wilson 
Betty Lou Wojciechowski
Tim and Jan Calkins 
Karen L. Wood
Ms. Jennifer J. Wood
Marilyn M. Woodruff
Dick and Diane Woodruff
Lewis Yeowart
Mrs. Kay M. Yeowart
DONATIONS: IN HONOR OF
Ms. Lynn Levine
Ms. Jeanine Levy
Mr. Barry Malloy
Miss Mia Maruca
Mrs. Anita McCord
Mr. Brian Michelson
Mrs. Myra Millrood
Mrs. Marcie Nadler
Mr. Jeff Neugroschel
Esta and Randy Neugroschel
Ms. Sara Neugroschel
Mrs. Herman Neugroschel
Ms. Lorri Oziri
Michael and Barbara Perilstein
Mrs. Robin Philippides
Mr. Zach Pistilli
Mrs. Anna Pistilli
Ms. Suzy Polgar
Mrs. Loni Pottieger
Mrs. Laura Rader
Mrs. Debbie Robinson
Mrs. Eileen Romm
Mrs. Barbara Rosenzweig
Mr. Michael Rosenzweig
Ms. Patricia Sacks
Mrs. Lynn Sakmann
Mr. David Schulz
Mrs. Alva Scott
Ms. Sharon Scullin
Mrs. Anne Seltzer
Mrs. Beth Shor
Mrs. Jenny Silverman
Mr. Jonathan Simon
Mrs. Amy Simon-Saidman
Richard Small, MD
Ms. Rita Sugarman
Mrs. Jill Tievy
Ms. Elina Vaysman
Mr. Bruce Wachter
Ms. Hannah Wainright
Mrs. Gayle Waxenberg
Mrs. Corinne Wernick
Ms. Margaux Zion
Ms. Allison Zion
Carolyn E. Hafterson
Ms. Jennifer L. Hafterson
Emma Harrington
Mrs. Andrea Bastien
June L. Hiebing-Van Ryzin
June L. Hiebing-Van Ryzin and David R.
Van Ryzin
Bonnie J. Hook
Bonnie and Brian Hook
Susan Hunter
Ms. Rita M. Pearl
Justin Isaacs
Gary Savatsky, MD
Terrence Jen
Ms. Lilian H. Leung 
Anna Jeter
TCF Foundation
Jack and Kathy Sheppard
Harry and Shirley Winters
Mary E. Karl
Mrs. Mary E. Karl
Honey Kennedy
Ms. Susan Kennedy
Karen Kilkenny
Cardinal Community
Roxanne L. Koerber
Ms. Pamela R. McKay
Melanie J. Kozak
Mrs. Amanda M. DaSilva 
Drew D. Krajeck
Ms. Mary A. Grabowsky 
Jason and Mariska Krajeck 
Emily Lanzola
Mrs. Rose M. Madej
Jack Larsen
Mrs. Laura Smith
Kirsten Larson
Ms. Stephanie J. MacLearn
Sean Lehosky
Mrs. Bernadette S. Semenick
Ellen Leoni
Miss Jennifer M. Kaminski
Ornah Levy
Mr. Jonathan C. Broome and Ms.
Ornah Levy, Esq. 
Carol Lore
Ms. Nellie G. Morgan
Braxton Maddox
Mr. Jamie Berry
Mr. Bruce Desrosiers
Mrs. Regina Maddox
53
general donations
GENERAL DONATIONS
DONATIONS LISTED WERE RECEIVED Between March 1, 2012, and May 31, 2012.
54
A+ Tutoring Inc.
Mr. and Mrs. Charles L. Abbott
Mr. and Mrs. Alex Abella
Mrs. Ruth Aberasturi
Mrs. Shirl Abrams
Accredo Therapeutics Inc.
Actelion Pharmaceuticals US, Inc.
Mrs. Wendy Adams
Mr. Robert G. Addis
Ms. Pamela Adkins
Mrs. Peggy Adkisson
Adventure City
Mrs. Danielle Aguirre
Ferhaan Ahmad, MD, PhD
Ms. Tracey Aiello
Ms. Jacqueline Q. Aiken
Orhan Akkaya, MD
Mr. Charles Alberta
Mrs. Sheryl Albin
Mr. and Mrs. Rino Aldrighetti
Joe and Lisa Alfonsi
Mrs. Betty J. Allen
Ms. Carolyn N. Allen
Mr. Andrew A. Marino and Mrs.
Megan T. Allen
Samuel A. Allen, DO, FCCP
Mehmet Altunisik, MD
Vincent Aluquin, MD
Mrs. Anita Amira
Ms. Elizabeth Andaas
Duane and Charlene Anderson
Ms. Irene Anderson
Mrs. Tammy Anderson
Ms. Vernay R. Anderson
Mrs. Laiho Anne
Ms. Cara L. Anthes
Mrs. Bernice Antongiovanni
Mrs. Dawn Apio-Manoa 
Francisco J. Aponte, RN
Aquarium of the Pacific
Mrs. Christine Archer-Chicko
Albert and Manuelita Arieta
Ms. Lisa Armstrong
Ms. Shirley Armstrong
Gentle Arnez, RN, BSN
Mrs. Barbara Arnold
Mr. and Mrs. John B. Arnold
Ms. Monica Arteaga
Vichaya Arunthari, MD
Ms. Lori Ann Arzadon
Mrs. Suzi D. Askew
Mrs. Patricia J. Atkinson
Atlantic Chiropractic & Wellness
Center
Ms. Kathleen Aulisio
Mrs. Gloria Aust
Ms. Gita Avantsa
Mr. Joel Avila
Mr. Don R. Babick
Ms. Deborah Bacquel
David B. Badesch, MD
Mr. and Mrs. Randy L. Badger
Denise Y. Bagford, RN, CRNI
Ms. Nanette Bailey
Nancy Bair, RN, CNS-BC
Mrs. Claudia Baker
Mr. Jack Baker
Ms. Mary Ellen Baker
Ms. Sue Baker
Mr. and Mrs. Harry Bakker
Mrs. Mary Beth Ball
Ms. Juanita Ballak
Mr. David L. Balser
Hanaa Banjar, MD
Dr. Natasha Banke
Mr. Hunter L. Banks
Jason G. Banks, PhD
Mr. and Mrs. Mark Banny
Ms. Nicole Barbee
Ms. Debra Barber
Mrs. Barbara Bargers
Mr. Kevin Bargon
Col. and Mrs. Benjamin H. Barnard 
Mrs. Catherine Barney
Ms. Gail F. Barr
Mr. Donald Barretto
George and Helen Barrow
Ms. Megan Bartlett
Ms. Michele Bartlett
Ms. Nona Barton
Mr. Jamie Bartosch
Mr. Douglas Edwards and Ms.
Sandra J. Basel
Mr. David Basener
Kathie Basso, RN
Ms. Marcia Bauer
Seymour and Gloria Baum
Bayer Healthcare Pharmaceuticals Inc.
Mrs. Elsa Beattie
Ms. Nancy Bedwell
Maureen Beeler, RN
Mrs. Michelle Beeler
Ms. Jennifer Behrendt
Mrs. Marjorie M. Behrens
Mr. Brad Belliston
Mr. Mark Bellrichard
Ms. Debra Beltramea
Ms. Susan Benjamin
Mrs. Pat Bennett
Ms. Joan F. Bennett-Schenecker
Ms. Sarah B. Benson
Mrs. Cheryl Bernier
Mr. Stuart M. Berwick
Ms. Kris Best
Mrs. Marcia W. Beverly
Mrs. Cathy Bicknell
Gretchen S. Bigley, RRT
Ms. Martine Bingham
Mrs. Lettie Biviano
BizCard Xpress
Ms. Vicki Bjorklund
Ms. Patricia A. Black
Ms. Dolores Blackwell
Mrs. Mary L. Blevins 
Ms. Anna Bloch
Sally and Harold Blood
Ms. Violet G. Boateng
Bob King Kia
Ms. Antoinette Boener 
Mr. Stephen Boers
Mrs. Jennifer Boggess
Ann Bogran, RN
Mrs. Diane Bogusch
Shawna R. Boland, RN, BSN
Ms. Tina Bolon
Ms. Emma Bonanomi
Mr. and Mrs. Jason Bond
Mrs. Nancy E. Bonnell
Mr. and Mrs. Nicholas Bonura
Mr. Dorrel Booth
Mrs. Margie Boothe
Ms. Marybeth Borkowski
Ms. Patricia Borrelli
Ms. Erica Bose
Mrs. Leta F. Bosely
Ms. Nancy Boughey
Ms. Bonita L. Boutin
Mr. and Mrs. Andrew H. Bowers, Jr.
Mrs. Charlotte R. Bowman
Mrs. Melissa Bowslaugh
Mrs. Bernece G. Boyd
Mr. Jeffrey Boyd
Mr. and Mrs. Paul D. Boyer, PhD
Daniel and Lowanda Vanessa Boynton
Bradford Renaissance Portraits
Ms. Dorothy E. Bradley
Sharon Bragg, RN, BSN, CCRN
Ms. Aidalia Braithwaite
Mrs. Mary Brattich
Mr. and Mrs. Ralph Braun
Ms. Nancy Bremner
Russell Brenneman, RN
Mrs. Wendy Brenwall
Ms. Victoria Bressner
Mrs. Loretha Brethour
Mr. Brian M. Brewer
Charles and Bonnie Brewer
Mrs. Susan Bricken
Mrs. Gladys P. Bridgewater
Ms. Melina Bridgewater
Barry and Elizabeth Brigham
Ms. Gerrie Brittin
Arthur and Virginia Broadhurst 
Sister Julienne Brock
Mrs. Sonia Brocko
Mrs. Frances Brodbeck
Mrs. Linda L. Brown
Dana Brule, RRT
Mr. Arley G. Brummitt
Dr. and Mrs. Bruce Brundage
Ms. Ruth Ann Bruzewski
Mr. Dwan Bryant
Ms. Stephanie Bucataru
Ms. Gail A. Bucci
Mrs. Christina Buchanan 
Ms. Robin Buckle
Ms. Doreen Buckley
Ms. Barbara Budlong
Buffalo Wild Wings
Mr. Greg Bujalski
Ms. Mary Ellen Bull
Todd Bull, MD
Mrs. Christine Bunting
Mr. and Mrs. Scott Burdick
Ms. Lynda Burdick
Miss Vicky Burdick
Charles D. Burger, MD
Ms. Cory H. Burger
Mr. and Mrs. Joe Burgholzer 
Ms. Dolores Burke
Ms. Kathryn Burke
Ms. Rochelle L. Burman
Mrs. Gladys L. Burns
Ms. Lorraine Burns
Ms. Ashley Buschardt
Ms. Laura Butcher 
Mr. Daniel Butler
Mr. Francis Butler
John Hyslop and Carey Butlien 
Ms. Amanda Butts
Saliha Butun, MD
Ms. Kathy Byrom
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Mrs. Mechelle Ramdeen
Ms. Diane Ramirez
Ms. Marelia Ramirez
David Rancourt, DO, MPH
Mrs. Susan Randle
Ms. Devina Rankin
Mrs. Dale Rankin-Mack
Miss Karen J. Rasmussen
Ms. Traci Rauch
Mrs. Lisa D. Rawls
Mr. Jason Rea
Mrs. Dianne E. Reed
Ms. Mary E. Rees
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Ms. Rose Reginio
Ms. Stephanie Rehberg
Mr. and Mrs. Tom W. Reichenberger
Ms. Ruby Reid
Ms. Lori Reiman
Mrs. Teresa D. Remaley
Mr. John A. Rennell
Ms. Lynn Repak
Mr. Ricardo Restrepo
Mr. George H. Reynolds
Miss Constance Rice
Mr. Paul Richards
Mrs. Joan D. Richardson
Mrs. Kathleen M. Richardson
Mr. Samuel Richardson
Mr. Michael G. Rigdon
Mrs. Brittany Riggins
Mr. Jeff Ring
Ms. Jennifer Ring
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Ms. Therese E. Sheridan
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Mr. and Mrs. Mike H. Sherwood
Mr. Nirav Sheth
Mr. Jaya Shetty
Mr. Russell M. Shook
Ms. Leeshelle Short
Ms. Mindy Shulman
Mrs. Rose M. Shultz
Thomas Siddons, MD
Ms. Phyllis Siebert
Mrs. Netty W. Silber
Mr. Saul Silber
Silver Eagle Distributors LP
Ms. Marilyn Simantel
Mr. and Mrs. Jerry C. Simmons 
Ms. Elizabeth Simpson
Ed and Judy Simpson
Mrs. Shari Sines
Lakisha Singleton, BSN
Prabhat Sinha, DO
Mr. and Mrs. Thomas J. Sintes
Mrs. Lisa Skeeters
Mr. Daniel Sklar
Mrs. Lea Ann Skogsberg
Mr. Dean Skuldt
Ms. Kelley Skumautz
Landra A. Slaughter, RN, CCRC
Ms. Joyce Slavik
Mr. Robert Slead
Mrs. Carol Slettvet
Arlene and Wayne Small
Ms. Aimee Smart
Ms. Alice Smethurst
Mrs. Cheryl Smiley
Mrs. Carley J. Smith
Ms. Caroline Smith
Mr. Chad Smith
Ms. Clara Smith
Mr. Dave Smith
Mrs. Jessica L. Smith
Col and Mrs. Billy F. Smith
Ms. Paula Smith
Ms. Rossie B. Smith
Ms. Virginia Smith
Kami L. Sneed, RN
Mr. and Mrs. Frederick A. Sneider
Rose G. Snipes, MD
Mrs. Cynthia Snow
Sociedade Portuguesa Rainha
Mrs. Marcille Sohlberg 
Ms. Cathy Sola
Ms. Arlene Sontag
Ms. Cynthia Sparks
Mrs. Diana L. Spenik
Andrea Spezzi, MD
Ms. Monica Surfaro Spigelman
Ms. Nadine P. Spires
Mrs. Elizabeth Sporio
Prof. Carleton Spotts
Hari and Subha Srinivasan
Mr. Gary D. Stacy 
Mrs. Rupal Stader-Shaw
Mr. Richard Staff
Mr. Mike Stalans
Ms. Glenda Stallings
Ms. Karen Stanton
Mrs. Tonya Stark
Mr. Rod Stecklein
Ms. Susannah Kirkham Steffy
Donna and Paul Stegman
Susan Steinbis, RN, MSN, APRN
Mr. Jack M. Stern
Mr. Joe Stevens
Ms. Nancy Stevens
Mr. and Mrs. Bill Stewart
Ms. Janet M. Stillwagon
Mr. Robert Stinogel
Ms. Lynn L. Stokke
Mrs. Elizabeth Stone
Mrs. Jennifer Stone
Paul Strachan, MD
Mrs. Dori Straky
Ms. Laura J. Strapp
Ms. Iris Strauch
Mrs. Joan Strine
Strong & Associates, PC
Roxana Sulica, MD
Linda and Stephen Sullivan
Mrs. Marjorie D. Sullivan
Mrs. Anne Sullivan-Parra
Mrs. Judy Surrick
Mrs. Rebecca L. Sutton
Mr. Doug Swanton
Ms. Carolyn M. Sweeney
Ms. Sheila Sweeney
Ms. Barbara Swichtenberg
Ms. Erin Swierad
Mrs. Jeane M. Szwarc
Mr. Yasunobu Tamaki
Mrs. Vicki Tandon
Ellis S. Tarsches, PA
Todd Tartavoulle, MN
Oktay Tasolar, MD
Paul and Kellie Tasto
Ms. Arlene S. Tate
Ms. Cloritha Taylor
Ms. Deborah Taylor
Ms. Frances Taylor
Kelly H. Taylor, RN
Mr. Larry Taylor
Mrs. Mary Jo Taylor
Ms. Marisol Tellez
Ms. JoAnn Tenney
Mrs. Joan Tennyson
Ms. June M. Terrell
Mrs. Grace A. Terry 
Ms. Lisa Tester
The Active Network, Inc.
The Original Pancake House
The Siena School
Ms. Sherolynn A. Thibault
Mrs. Patricia C. Thill
Mrs. Barbara E. Thomas
Ms. Lesle Thomas
Vickie Thomas, BS
Mr. and Mrs. Chuck Thompson
Dr. and Mrs. David C. Thompson
Ms. Joyce Thompson
Mrs. Martha H. Thompson
Mrs. Nancy B. Thompson
Ms. Ruthanne Thompson
Mrs. Shirley Thompson
Mrs. Vickie Thompson
Mrs. Margaret Thornburg
Mrs. April Thornton
Ms. Cheryl Thorp
Mrs. Lawana R. Timberlake
Mrs. Jean A. Tingwald
Donald and Rachel Tira
James Tislow, MD
Michelle Tokuda and Robert Deluze
Ms. Jennifer Tomlinson
Adriano Tonelli, MD
Miss Bethany Tooley
Roger and Deborah Towle
Ms. Lakiesha Townsell
Bryant Tran, PharmD
Mrs. Kari Trapp
Ms. Sandy Traub
Linda Trautman, PhD 
Tree Line Design Group
Mrs. Perla Trejo
Denis and Gail Tremblay
Mrs. Kay Triplett
Mr. and Mrs. Mitch Trotter
Mrs. Suhwa L. Tsai
Mr. and Mrs. Dale Tuckey
Ms. Tracey D. Turnbull
Mr. Gerald Turner
Mrs. Viola M. Turner
Ms. Marguerite G. Turpel
Mrs. Debra Turturillo
Mrs. Tina Tuttle
Mrs. Gwen H. Tymczyszyn
Ms. Sylvia Ulman
United Therapeutics Corporation
Laura and James Urmston
Mrs. Maria Lenita Utuk
Ms. Maria Valazzi 
Mr. Antonio Valles
Mr. Vincent van der Klaauw
Ms. Janet M. Van Swoll
Mr. and Mrs. Steve Van Wormer
Donna M. VanKempen, RN
Mrs. Denise VanSickle
Ms. Lorun C. Vanskiver
Mr. and Mrs. Thomas Vargas
Ms. Jeanne Varvaro
Amanda C. Vasquez
Mrs. Wilhelmenia H. Vaughn
Mr. Randolph Vaz
Mr. Esmeraldo Vazquez
Mrs. Penelope Vazquez
Ms. Petronila Vazquez
Ms. Kim Vea
Richard Veenstra, RPh
Mr. Erick A. Vega
Mrs. Kathy Veglia
Mr. and Mrs. Terrance J. Ven Rooy
Ms. Jennifer Vento
Ventripoint Diagnostics
Mrs. Carla Verde
Mrs. Karen R. Verlander
Bill and Christy Victor
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Ms. Cynthia J. Vosnos
Dr. John Vosnos
Mr. Michael L. Vretenar
W & W and Sons Contractors Inc
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PATHLIGHT SUMMER 2012 Mrs. Eva Wagner
Mr. Daniel Wahle
Mr. Peter Wahle
Mrs. Christina Waldman
Mrs. Betty Walker
Gennyne A. Walker, PhD
Stephen H. Walker, MS, CRNP
Mr. and Mrs. George Wallace
Mr. Kristin Walter
Ms. LaDona A. Walters
Ms. Dona L. Warner 
Mrs. Joyce G. Washington
Mrs. Karen Waters
Ms. Elaine Watson
Jay A. Watson, Pharm D
Ms. Christine Weakland
Mrs. Charmaine Weaver
Mrs. Patsy Webb
Mrs. Cheryl Wegener
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Judy and Bill Weizel
Ms. Leona Welker
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Mrs. Kelly Wennerth
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Mrs. Ashley Werchanowskyj
Ms. Donna Wesley
Mrs. Lenna T. West
Western Photos
Ms. Judy Wheelwright
Dr. Jim White and Ms. April
Luehmann 
Mr. Nic White-Petteruti
Mr. and Mrs. Alan J. Whitman, RN
Mr. John E. Whitman
Mrs. Carol J. Whitmer
Mrs. Renee Whitmire, RN
Ms. Daryl B. Whitt
Ms. Debbie Wickersham
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Ms. Jayne Wilcox
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Ms. Charlotte E. Williams
Ms. Debra E. Williams
Mr. Gordon R. Williams
Mr. Leonard Williams
Mrs. Sharon L. Williamson
Ms. JoAnne Willis
Wilshire Golf Club
Melisa Wilson, MSN, ARNP, ACNP,
BC, BSESS
Ms. Susan Wilson
Marge Wilusz, DO
Mrs. Georgia Winkler 
Mrs. Mary Winn
Winston-Salem Dash
Ms. Kelli Wisla
Mr. and Mrs. Daniel Wissman
Mrs. Lesli Witte
Ms. Sherriel D. Wold
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Ms. Ann Woodall
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Ms. Joan J. Wrenn
John and Karen Wright
Daniel and Betty Wubben
Mrs. Alicia Wydra
Mr. and Mrs. Bernard Yamakaitis 
Mrs. Barbara L. Yamasaki
Wei Yang, MD
Mr. and Mrs. Ed Yorina
Dr. Victoria York
Mrs. Doris O. Young
Mrs. Jayne Young
Mr. Richard G. Young
Ms. May Yu
Ms. Tara Yuill
Ms. Tara Zapatka
Ms. Damara Zepeda 
Mr. Scott Ziesmer
Mr. Ken Zintak
GENERAL DONATIONS
Mrs. Janice Rinker
Ms. Rosemary Rios
Michael G. Risbano MD, MA, FCCP, MA
Ms. Cynthia Rivera
Lisa Ann Rivers, RN
Mrs. Susan Rizkalla
Ms. Linda J. Robbins
Mr. Kevin Roberson
Mr. Malcolm Roberts
Mr. Greg Robertson
Mr. Freddie E. Robinson
Mrs. Stephanie D. Robinson
Ms. Vivian Roby
Mr. Robert Rochford
Ms. Cindy Roddy
Mrs. Ilsa Rodon
Ms. Kathleen A. Rodriguez
Mrs. Jane Roeske
Roman Cucina
Mr. Bradley R. Romine
Mrs. Gloria Romines
Mr. Robert D. Romines
Ms. Tracy Ronzio
Erika B. Rosenzweig, MD
Ms. Elizabeth M. Rossi
Joan M. Rossi, RN
Ms. Joy Rossi
Mr. Edward W. Rost, Jr.
Rowley Portriature
Connie and Bill Roylance
Mr. Marc Royster
Mr. Jack Rubin
Mr. Aramis Rubio
Mr. Stephen F. Rufer
Kay and Bobby Ruff
Mrs. Jacquelyn Rummel
Ms. Becky Ryan
Mr. David Ryan
Mr. Don Ryan
Ms. Lori Ryan
Ms. Margaret Ryan
Mrs. Mary Ann Ryan
Mary Ann Ryan, MD
Ms. Mary Beth Ryan
Mr. Stephen Ryan
Mr. Charles Sadler
Mrs. Laura Sadler
Ms. Kate Safron
Mr. and Mrs. Frank Sagarese
Mrs. Vermettya Sahmel
Ms. Regina K. Sakurai
Mr. and Mrs. Yousri A. Salamah
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Salvatore Cucina Italiana
Mrs. Judith Sanderson
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Mr. Gerardo Santos
Ertan Saribas, MD
Ms. Marge Saslawsky
Ms. Karen Sassen
Mrs. Brandie Sasser
Mr. Glenn Sasser
Mrs. Judith H. Saucier
Richard and Matacha Saul
Ms. Stacey Sayer
Ms. Claire K. Schafer
Edna J. Schambers, RN, BSN
Ms. Heather Scherzer
Mr. Gary Schevers
Mr. Fred Schilling
Ms. Elizabeth Schindler
Ms. Marie Schluge
Ms. Lee Schmidt
Mr. Matt Schmit
Virginia M. Schneider, RN, BSN
Mr. Jeff Schoenborn
Mr. David P. Schroeder
Ms. Lisa Schumacher
Ms. Monica Schwartz
Ms. Laura Scott
Robert Scott, MD, PhD, FACC
Ms. Wilma L. Scott
Scott Westmoreland Fine Art
Ms. Vivian Seifert
Ms. Arlene Seppelt
Mr. and Mrs. Kenny Seubert
Mr. John P. Severson
Mrs. Farhana Shabbir
Mr. Falgun Shah
Mrs. Pavlova Shah
Shamrock Super “Team PHive
Thousand”
Ms. Joan D. Shannon
Mrs. Sandra Sharaeff
Robert and Elsie Shartle
Mr. John Shea
Ms. Carolyn D. Sheehy
Deb and Tim Shelton 
Mrs. Georgia H. Shelton
57
Legacy
of
Hope
Society
PHa’s legacy of hope society
To honor those who have included PHA in their estate plans or
whose legacies have been realized, PHA created the Legacy of Hope
Society. PHA is pleased to recognize the following members.
Sandra Alt Awood
Dauna Leigh Bauer*
Sylvia Marie Becherer*
Gloria G. Blodgett*
Dorothy E. Bradley
Roberta F. Browning* and
Lee Broadbent
Rita and Bruce Brundage
Jane P.* and Harold P.
Cooper
James F. Corbett*
Laura Hoyt D’Anna, DrPH
Charles W. DeVier, III*
Linda M. Feibel*
Barbara Gamer
Franklin D. Gillespie*
Tammy* and Dean Hazen
Mary Jan and Carl Hicks
Jacquelyn Holt
Richard L. Horrocks
Jessie Kohler
Terri L. Kopp*
Gloria Lang*
Thomas and Mary Jo Linnen
Sally Maddox
Bonnie and Michael McGoon
Joseph W. Mihuc*
Karen Moody
Marjorie D. Mott*
Joyce L. Mowrer*
Dorothy and Harry Olson
Rita and Guy Orth
Pat and Jerry Paton
John and Cynthia Pickles
Carol Posner and Marc Priore
Frances A. Price
Louise and Gene Salvucci
Judy and Ed Simpson
Kelley Skumautz
Marcia and Jack Stibbs
Helena Strauch*
Frank A. Tobac*
Torres-Gonzalez Family
Deborah and Roger Towle
Carol B. Ungar
Daniel R. Walsh*
Andrea and Stephen White
Are We Missing You?
Please update my mailing list information as follows:
(Please print.)
q Mr. q Mrs. q Ms q Dr. q Miss
Name: ___________________________________________
Business (if any): __________________________________
Address: __________________________________________
City: _____________________________________________
State: __________________ Zip: _____________________
q
Please check here if this is an address change.
Phone: ___________________________________________
Fax: ______________________________________________
Email: ____________________________________________
I am a:
q
q
Caregiver
q
Parent of a child with PH
Medical professional (title and affiliation): _______________________________________________ Mail or fax completed form to:
Pulmonary Hypertension Association
801 Roeder Road, Ste. 1000
Silver Spring, MD 20910
Fax: 301-565-3994
*deceased members
For more information on PHA’s legacy planning program,
call Ellen Leoni at 301-565-3004 x756, email Giving@
PHAssociation.org or visit www.PHAssociation.org/Give
q
Patient
You may also submit a change of address online at
www.PHAssociation.org/ContactUs
PHA Staff
Rino Aldrighetti
Haley Elmers
April Grimsley
Adrienne Dern
Meghan Finney
Jennifer Kaminski
President
[email protected]
Senior Vice President
[email protected]
Mollie Katz
Vice President, Community
Engagement
[email protected]
Dorothy Bradley
Office Assistant
Debbie Castro
Director, Volunteer Services
[email protected]
Chanda Causer
Manager, Patient Outreach &
Services
[email protected]
Danielle Clifford
Administrative Assistant
[email protected]
Micaela Cohen
Director, Medical Services
[email protected]
Tracey Delaney
Office Assistant
[email protected]
58
Manager, Office of the President
[email protected]
Patient Education Manager
[email protected]
Caitlin Flewellen
Online Education Associate
[email protected]
Suzanne Flood
Marketing & Communications
Manager
[email protected]
Kathryn Frix
Online Community Liaison
[email protected]
Ellie Falaris Ganelin
Design & Publications Associate
[email protected]
Rebecca Gifford
Meeting Planning Associate
[email protected]
Bob Gray
Major Gifts Officer
[email protected]
Diane Greenhalgh
Director, Web Services
[email protected]
Administrative Assistant
[email protected]
Finance & Human Resources Manager
[email protected]
Sophie Klein
Volunteer Services Associate
[email protected]
Arsène Koissy
Database Manager
[email protected]
Katie Kroner
Director, Advocacy and Awareness
[email protected]
Rebecca Kurikeshu
Medical Outreach Program Associate
[email protected]
Ellen Leoni
Development Associate
[email protected]
Doreen Lucadamo
Director, Meetings & Conference
Planning
[email protected]
Leslie Mahaney
Special Events Associate
[email protected]
Megan Mallory
Associate Director, Publications,
Pathlight Editor
[email protected]
Jessica McKearin
Associate Director, Special Events
[email protected]
Michal Rachlin
Kerry Bardorf Family Support Program
Associate
[email protected]
Paul Ravenscroft
Director, Finance & Human Resources
[email protected]
Jessica Ritter
Associate Director, IT & Office
Operations
[email protected]
Meghan Tammaro
International Services Manager
[email protected]
Erin Wiegert
Executive Program Associate
[email protected]
Elisabeth Williams
Grassroots Campaigns Manager
[email protected]
Contact PHA
Phone301-565-3004
FAX301-565-3994
[email protected]
Envelope of Hope (Free Packet for New Patients)
Chanda Causer
Member Services and Address Changes
Ellen Leoni
New Member Packets, Pins, Brochures and Cards Support Groups
Debbie Castro
x777, [email protected]
Pathlight and Persistent Voices
Submissions
--------------------
The Fall Issue deadline is July 31, 2012.
Pathlight is your publication.
Tell us about your support
PHA Resources and Services
group, recent event, phenomenal PHer or anything else you’d like
Patient-to-Patient Support Line (daytime, please)1-800-748-7274
Children with PH/PPH
Laurie Jeter, [email protected]
Organization Liaisons
National Institutes of Health:
Heart, Lung, and Blood Institute
Rino Aldrighetti, [email protected]
American Thoracic Society:
Public Advisory Roundtable
Rino Aldrighetti, [email protected]
Patient-to-Patient Support Line Coordinator
Pat Paton, [email protected]
to share. Let us know how you cope with PH, how you live and work
I n s u r a n c e R e s o u r c e s of the community, let us know. Please contact us with your input and
Accredo’s Hotline for Flolan
1-866-9FLOLAN
for Veletri
1-866-344-4874
for Remodulin
1-888-485-8350
for Tracleer
1-877-483-6828
for Ventavis
1-877-483-6828
Caring Voice Coalition
1-888-267-1440
Curascript Helpline
1-866-4PH-TEAM
CVS Caremark Helpline 1-877-242-2738
(Remodulin, Tracleer and Flolan)
GlaxoSmithKline Patient Assistant Programs
www.gskforyou.com
Letairis1-866-664-LEAP
NeedyMedswww.needymeds.org
Partnership for Prescription Assistance
1-888-477-2669
www.pparx.com
Priority Healthcare Remodulin Hotline
1-877-462-6225
Tracleer Access Program
1-866-228-3546
every day. We’ll accept articles, quotes, photos, tributes, etc. for
consideration in the newsletter. We also accept submissions of
personal PH stories, pictures, poems and quotes for publication in
the next issue of Persistent Voices. If you’re not comfortable writing
your story — or if you just can’t find the time — contact us and we’ll
interview you about it and write it for you. If you are interested in
reporting for Pathlight or conducting interviews with other members
stories! Send submissions, with your phone number, to:
“Newsletter Submission” or
Print Services Department
Pulmonary Hypertension Association
Work submitted will be printed as space permits. Please let us know
if you would like anything returned. PHA cannot be held responsible
for any materials lost.
Board of Trustees
Scientific Leadership Council
Laura D’Anna, DrPH, Chair
Vallerie V. McLaughlin, MD, Chair-Elect
Sally Maddox, Secretary
Roger Towle, Treasurer
Carl Hicks, Immediate Past Chair
Richard Channick, MD, Chair
Karen A. Fagan, MD, Chair-Elect
Vallerie V. McLaughlin, MD, Immediate Past Chair
Charles Burger, MD
Murali Chakinala, MD
Serpil Erzurum, MD
Nicholas S. Hill, MD
Marc Humbert, MD
Dunbar Ivy, MD
Zhi-Cheng Jing, MD
Anne M. Keogh, MD
Dinesh Khanna, MD
James Klinger, MD
Michael Mathier, MD
John Newman, MD
Ronald Oudiz, MD
Myung Park, MD
Ioana Preston, MD
Tomas Pulido, MD
Erika Berman Rosenzweig, MD Robert Schilz, MD
Virginia Steen, MD
Duncan Stewart, MD Sean Studer, MD
Darren Taichman, MD
Fernando Torres, MD
Terence Trow, MD
Roham Zamanian, MD
Trustees-at-Large
Robyn J. Barst, MD
Colleen Brunetti
Linda Carr
Richard Channick, MD
Louise Durst, RN
John Hess
Dunbar Ivy, MD
Tony Lahnston
Michael D. McGoon, MD
Rita Orth, RN
Cindy Pickles, RN
Diane Ramirez
Harry R. Rozakis
Traci Stewart, RN
Jack Stibbs
Steve Van Wormer
Rev. Stephen White, PhD
Emeritus
Dorothy Olson
Harry Olson
Jerry Paton
Pat Paton, RN
Edwin Simpson
Judith Simpson, RN, EDS
“Newsletter Submission”
[email protected]
Liaisons
Louise Durst, RN, Chair, PH Professional Network
Rita Orth, Patient Liaison
Distinguished Advisors
David B. Badesch, MD
Robyn J. Barst, MD
Bruce H. Brundage, MD
Michael D. McGoon, MD
PH Professional Network
Executive Committee
Louise Durst, RN, Chair
Traci Stewart, RN, MSN, Chair-Elect
Arlene Schiro, NP, Immediate Past Chair
Gerilynn Connors, RRT
Stephanie Harris, RN, BSN
Fran Rogers, MSN, CRNP
Barbara Smithson, RN, MSN
Glenna Traiger, RN, MSN
Melisa Wilson, APRN-BC
Pathlight & Persistent Voices
Megan Mallory, Editor
Michael D. McGoon, MD, Medical Co-Editor
Karen A. Fagan, MD, Medical Co-Editor
Camille Frede, Youth PHenomenal Youth Editor
Nancy Frede, Parent PHenomenal Youth Editor
Amanda Martin, Volunteer Copyeditor
Edward Freundl, Volunteer Copyeditor
Jodi Palmer, Volunteer Copyeditor
P AT H LIG H T ROUNDTABLE
PHA thanks the Pathlight Roundtable volunteers for their
guidance and contributions to this issue of Pathlight.
Shirley Craig, General Review
Robert Tash, Volunteer Services
Raye Bohn, Advocacy and Awareness
Jessica Lazar, PA, Medical Services
Ex Officio
Rino Aldrighetti
PATHLIGHT
SUMMER 2012 Patient-to-Patient Support Line: 1-800-748-7274
59
356
YORK, PA
Web www.PHAssociation.org
E-mail [email protected]
Phone
301-565-3004
Patient-to-Patient Support line 1-800-748-7274
(daytime please)
Pathlight
NORD Honors PHA for
Leadership in the PH Community
T
he National Organization for Rare Disorders (NORD)
awarded PHA the Abbey S. Meyers Leadership Award
for outstanding leadership and representation of
our members in education and advocacy. Roughly 500
members of the rare disease community came together
on May 15, 2012, to recognize outstanding Members
of Congress, the NIH, as well as companies and
organizations that strive to improve the lives of people
with rare diseases. In honoring PHA with this award,
NORD highlighted many of PHA’s services, including: PHA
on the Road: PH Patients and Families Education Forums,
PHA’s International PH Conference, PHA Classroom, PHA
Online University, PHA Medical Education On-Demand
Programs, Lobby Day visits to Capitol Hill, PHA’s growing
research program that has committed more than $11.5
million to cutting-edge PH research, PHA’s Patient-toPatient Support Line and PHA’s many global connections.
PHA has been a member of NORD since 1993.
Resources for Coping with PH
B
eyond managing the physical aspects of PH,
patients and their families often struggle to cope
with the emotional and social aspects of life with
a chronic disease. PHA has developed resources to
help patients and family members understand the
non-medical impacts of PH and learn effective coping
mechanisms.
Coping with Pulmonary Hypertension Guides are
available for:
• Newly Diagnosed Patients
• Long-term Survivors
• Parents
• Coming soon! A Guide for
Caregivers
• Coming soon! A Guide for Teens
Visit www.PHAssociation.org/Coping to learn more
and download your free guide(s) today!

PatHligHt - Pulmonary Hypertension Association

Transcripción

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