Advocacy - San Diego - Hemophilia Association of San Diego County

Advocacy - San Diego - Hemophilia Association of San Diego County

The Official Newsletter of the Hemophilia Association of San Diego County • 3550 Camino Del Rio North • Suite 105 • San Diego, CA 92108
Volume 34 Issue 1 2014
get ready for teen leadership camp
photo courtesy Catalina Island Chamber of Commerce
catalina island ~ may 24-26, 2014
H
ASDC is pleased to announce our First Annual Teen
Leadership Camp for boys and girls ages 15-18 with
bleeding disorders, diagnosed carriers and their siblings. Our camp provides weekend camping and an outdoor
program which challenges at both the individual and group levels.
Programs anticipated for this year include snorkeling, kayaking,
paddle boarding, hiking, beach campfires and leadership training
while camping at Campus by the Sea in Avalon, CA.
Mark your calendars for May 24-26 and contact the office
for more info.
In This Issue
HEMOP
COUNC
CALIFO
Annual
Meeting
page 4
New
Staff
Member
page 6
Vo l u m e V I
HCC
News and
Update
page 8
Issu
The CA Department of
and HCCPage
has1 secured a se
Bloodlines • Volume 34 Issue 1
The CA Children’s Serv
is published quarterly by:
The Hemophilia Association of
San Diego County (HASDC)
Monthly mailings and invitations will be
sent in the months between newsletters
when information pertinent to the
bleeding disorders community is available.
Physical & Mailing Address
3550 Camino Del Rio North, Suite 105
San Diego, CA 92108
Tel. (619) 325-3570
Fax (619) 325-4350
E-mail: [email protected]
Website: www.hasdc.org
find us on facebook
The Hemophilia Association of San Diego County (HASDC) does
not endorse any particular pharmaceutical manufacturer or home
care company.
PLEASE NOTE: The companies whose advertisements are listed
herein have purchased this space, and are NEVER provided with
members’ names, addresses or any other personal details. Paid
advertisements and paid inserts should not be interpreted as a
recommendation from HASDC, nor do we accept responsibility
for the accuracy of any claims made by paid advertisements or
paid inserts.
Since we do not engage in the practice of medicine, we always
recommend that you consult a physician before pursuing any
course of treatment.
Information and opinions expressed in this publication are not
necessarily those of the Hemophilia Association of San Diego
County, or those of the editorial staff.
MATERIAL PRINTED IN THIS PUBLICATION
MAY BE REPRINTED WITH EXPRESS PRIOR WRITTEN
PERMISSION FROM THE EXECUTIVE DIRECTOR.
NUMBER AND QUARTERLY DATE MUST BE INCLUDED.
SUPPORTED, IN PART, BY
IN COLLABORATION WITH
THE HEMOPHILIA COUNCIL OF CALIFORNIA (HCC)
Page 2
officers
President: Sean Pentz
[email protected]
Vice President: Yvette Bryant
[email protected]
Treasurer: Nicole Chen
[email protected]
Secretary: Shelley Flores
[email protected]
directors at large
Misty McCartney
Renatto Medranda
@HemophiliaSD
DISCLAIMERS
Bloodlines • Volume 34 Issue 1
Hemophilia Association
of San Diego County
Board of Directors Roster
staff
Executive Director: Nooshin Kosar
[email protected]
Program Coordinator: Lisa Heffernan
[email protected]
graphic design & printing
PrintDiego
[email protected]
director’s corner
happy spring! ~ ¡Feliz Primavera!
by nooshin kosar
I
would just like to start off by saying thank you to everyone who
attend our Annual Meeting at the San Diego Zoo Safari Park.
Whether you were there to learn or you were a sponsor, the day
could not have been a success without everyone’s participation.
We hope you were able to enjoy some time in the park after
lunch.
We are very excited for what’s to come in 2014 and look
forward to seeing all of your faces at our various events
throughout the year. You can look forward to our very first Teen
Leadership Camp which will take place in May, Camp Pascucci’s
move to Big Bear in August and our 2nd Annual Hemophilia
Walk in October.
We hope you are enjoying the warm weather and looking
forward to seeing you soon! n
M
e gustaría empezar por dar las gracias a todos los que
vinieron a nuestra reunión anual en el San Diego Zoo Safari
Park. Si usted estaba allí para aprender o como patrocinador, el
día no podría haber sido un éxito sin la participación de todos.
Esperamos que haya podido disfrutar de un rato en el parque
después del almuerzo.
Estamos muy entusiasmados por lo que vendrá en el 2014 y
esperamos verlos a todos en nuestros diferentes eventos durante
el año. Mirando hacia el futuro, esperamos con anticipación
nuestro primer Campamento de Liderazgo para Jóvenes, que
se celebrará en mayo, el cambio del Campamento Pascucci
a Big Bear en agosto y nuestra segunda Caminata Anual para
Hemofilia en octubre.
Esperamos que estén disfrutando del clima cálido y los veremos
pronto! n
Donations
Your generous support helps us deliver life-enhancing services to the bleeding disorders community.
Name: _______________________________________________________________________________________________________________________________
Address:______________________________________________________________________________________________________________________________
City:__________________________________________________________________________________State:____________Zip Code:______________________
Phone:_______________________________________________________ e-mail___________________________________________________________________
GENERAL DONATION:
General Donation: $________________________________
This donation is in honor/memory (circle one) of ____________________________________________________________________________________________
Please send an acknowledgment to:
Name: ______________________________________________________________________________________________________________________
Address: _____________________________________________________________________________________________________________________
City:_________________________________________________________________________State:____________Zip Code: ______________________
Total Enclosed by Check: $________________________________
Mastercard/Visa (circle one) Number _________________________________________________________________Exp. ___________________________
Name on Card ______________________________________________________________ Total Amount to be charged: $___________________________
Signature ________________________________________________________________________________________________________________________
Mailing List:
Please ADD my name to the Association’s Mailing List.
Please REMOVE my name from the Association’s Mailing List.
The Hemophilia Association of San Diego County is a 501 (c)(3) charitable organization. Donations to HASDC are tax deductible to the extent allowable
by the IRS.
Donations should be sent to: Hemophilia Association of San Diego County, 3550 Camino Del Rio North, Suite 105; San Diego, CA 92108
Or fax this form with credit card donations to: HASDC @ (619) 325-4350.
Page 3
Bloodlines • Volume 34 Issue 1
HASDC’s 41st Annual Meeting & Family Information Day
successful day at safari park
by nooshin kosar
O
n March 15th HASDC held its 41st Annual Meeting and
Family Information Day at the San Diego Zoo Safari Park. The morning started out quite chilly but quickly warmed up to be
a beautiful day at the park. HASDC President, Sean Pentz started
of the meeting with some association changes, announcing our
new Executive Director, Nooshin Kosar and our newly hired
Program Coordinator, Lisa Heffernan. Presentations by Alexis
Sexton, Program Coordinator and Thomas Cramer, Hemophilia
Study Coordinator at UCSD HTC along with Dr. Courtney
Thornburg from Rady Children’s Hospital provided treatment
center updates, introduction of new staff, available programs
to families along with current research topics and trials. Maria
Perez from Pfizer Hemophilia gave a great, energetic talk on
“Exploring Mental Health in the Hemophilia Community.” She
got right in the middle of the audience, walking around and asking
everyone for their input. She made a heavy subject something to
be more comfortable with and feel open to discussing concerns.
Following, Terri Cowger-Hill from the Hemophilia Council of
California along with Elizabeth Stoltz of Baxter spoke on the
health exchange, Medical and CCS updates in great detail.
During the educational sessions, the kids had the opportunity
to enjoy a private tram ride throughout the park, learning about
the various animals along the route. In addition to the tram ride
they enjoyed a private animal meet & greet with a kangaroo,
various birds and more. Families were able to enjoy a great BBQ
lunch followed by free time to explore the park.
HASDC staff and board would like to thank all the attendees,
exhibitors, guest speakers and especially the San Diego Zoo
Safari Park personnel for making our annual meeting and family
information day a great success. n
A big thank you to our Annual Meeting Sponsors
Major Sponsors
Youth Activities & Education Sponsors
BioMed • Bioscrip • BioRX • Octapharma • Quality Home Infusions
We would like to extend our sincere gratitude to the following companies and individuals who helped to
significantly advance the goals and mission of HASDC during 2013. We are thankful for your continued support.
When you give back to the community, everyone benefits.
Thank you to all the foundations, donors & sponsors
who donated $25 or more in 2013:
uAccredo
uArthristis Care &
Research Center
uBaxter
uBayer Healthcare
uBeverly Russell
Enterprises
uBiogen Idec
uBioMed
uBioscrip
uBioRX
uBrothers
Healthcare
uBravo Foundation
uBruce & Carol
Heilbrunn
Page 4
Bloodlines • Volume 34 Issue 1
uBryant Family
uCalifornia Bank &
Trust
uCamelot Hair &
Nails
uCecil Gibson
uCharisma
uChristopher
Brunwin
uChuck Gorman
uCindee Shaffter
uCipriano Correa
uCFC
uCHAD
uCJ Wilson
Charities
uCommunity
Campership
Council
uCommunity
Chiropractic
Center
uCommunity
Service
Association
uCoram
Hemophilia
Services
uCoronado
Police Officers
Association
uCSL Behring
uCushman Family
Foundation
uCVS Caremark uKedrion
uKevin Killarky
uDixon Golf
uLarry Methvin
uDouglas Flick
Installation, Inc.
uErik Godtlibsen
uFactor Support uLaura Ontiveros
uLaurel McDonnell
Network
uFordify the Family uLinda Clement
Program
uLindy Gerbig
uGrifols
uLisa Glanz
uHuntalas Family uMark Kretz DDS
uIngrid Van Moppes uHeather Messerly
uJacinto Toribio
uNancy Link
uJeffrey T. Vincelett uNancy Tarbell,
uJoanne Hahn
uNational
Cornerstone
uJudy Faitek
uJustin McNeill Jr.
uNational Specialty
Pharmacy
uNovo Nordisk
uOctapharma
uPamela Barton
uPatrick Coburn
uPremier
Hemophilia Care
uQuality Home
Infusion
uRady Children’s
Homecare &
HTC
uRalph Sanchez
Insurance Agency
uRay Rubio
uRomero Family
uSundt
Foundation
uTnD
Cornerstone
uTriways, Inc.
uRobert Bryans Jr.
uRosalie
Staudenmayer
uUCSD Total
Hemophilia
Care
uUnited Way
uWag’ N Tails
uWalgreens
GOLF FOR A CURE
21st Annual Golf Tournament
bene�iting the
Hemophilia Association of San Diego County
THE CROSBY
at Rancho Santa Fe
Tuesday, May 20, 2014
Registration begins at 9:30am • Shotgun Start at 11:00am
Join us for an exciting day of golf, camaraderie and fun, while improving the lives of families affected by
bleeding disorders. Tournament proceeds go toward our annual youth summer camp, educational
programming, youth group, tutoring, food and emergency assistance. Without your contribution, the
services we provide would never exist and the search for a cure would cease.
All golfers will enjoy a wonderful day at The Crosby, receiving green fees, a gift bag, premium prize, lunch,
an opportunity to win various prizes throughout the day and admission to our dinner that includes a
silent & live auction.
The Hemophilia Association of San Diego County (HASDC) is a 501 (c)(3) nonpro�it organization in San
Diego assisting fami-lies affected by genetic bleeding disorders. Hemophilia is a genetic bleeding disorder
in which proteins responsible for normal blood clotting are either dangerously low or nonex-istent. The
average annual cost of caring for a person with severe hemophilia is over $200,000, making access to
support services and outreach crucial for those affected.
For more information, call the HASDC of�ice at 619-325-3570
Page 5
Bloodlines • Volume 34 Issue 1
hasdc news
welcome lisa heffernan
L
isa Heffernan joined HASDC this spring as the new Program Coordinator. Lisa comes to us with
over ten years experience in the nonprofit arena. She worked with the community as a Programs
Manager for the Epilepsy Foundation of San Diego County, and as an Account Manager and Project
Manager for BloodSource in Northern California. Lisa was born and raised in Sacramento. She graduated
from San Diego State University with a degree in Economics. She then earned her Certified Meeting
Professional (CMP) designation and worked in the corporate meeting and events industry. A sixth
generation Californian, Lisa currently lives in the beach area with her husband, two children, two dogs
and two cats. n
HASDC’s ANNUAL
Camp Pascucci
Save the Date
August 10-15, 2014
at Camp Whitle in Big Bear, CA
For more information
or to request an application
call the office at (619) 325-3570
We are pleased to invite your child(ren) to HASDC’s Annual Camp Pascucci 2014. Our camp
is specially designed for youth affected by inherited bleeding disorders. We are excited to
announce our new location, Camp Whitle in Big Bear! For those of you with other children
of camp age (7-14), such as diagnosed carriers or siblings without a bleeding disorder, they
may also attend Camp, but space is limited and available on a first come, first serve basis.
Page 6
Bloodlines • Volume 34 Issue 1
hemophilia research
Phase 1 Trial for Alnylam’s ALN-AT3
A
lnylam Pharmaceuticals, based in Cambridge, MA, has
announced that it has initiated a Phase 1 study of ALN-AT3,
an investigational therapy for the treatment of hemophilia and
rare bleeding disorders.
The company is developing ALN-AT3, a subcutaneously
administered (injection just under the skin) RNAi therapy that
targets antithrombin (AT) as a way to treat hemophilia A or
B, hemophilia A or B with inhibitors, and other rare bleeding
disorders. AT is a small plasma protein molecule produced in the
liver that inactivates factor Xa and thrombin, which are needed
for blood clotting. It plays a key role in normal hemostasis.
ALN-AT3 incorporates Alnylam’s proprietary gene-silencing
technology called RNA interference or RNAi. Discovered by
scientists in the late 1990s, RNAi is a natural process in which
cells turn off, or silence, the activity of specific genes. ALN-AT3
silences certain genes associated with AT generation, “switching
off” the protein’s production.
evaluate the safety and tolerability of a single low dose of ALNAT3, with the potential to show changes in AT plasma levels at
sub-pharmacologic doses. Part B of the study will be an openlabel, multi-dose escalation study enrolling up to 18 people with
moderate to severe hemophilia A or B. It will evaluate the safety
and tolerability of multiple doses of subcutaneously administered
ALN-AT3 in hemophilia subjects.
“The unmet need for new therapeutic options to treat people
with hemophilia remains very high, particularly in those patients that
develop inhibitory antibodies to their replacement factor. Indeed,
availability of a safe and effective subcutaneously administered
therapeutic with a long duration of action would represent a
marked improvement over currently available approaches for
prophylaxis,” said Claude Negrier, MD, head of the Hematology
Department and director of the Haemophilia Comprehensive
Care Centre at Edouard Herriot University Hospital in Lyon,
France “I look forward to the continued advancement of this
innovative therapeutic candidate in clinical studies.” n
The Phase 1 study will be conducted in the United Kingdom
Source: Alnylam press release dated January 22, 2014It was a
as a single- and multi-dose, dose-escalation study consisting of warm 80 degree San Diego day, the hours approaching the holiday
two parts. Part A will be a randomized, single-dose escalation party definitely did not fee like Christmas was coming.
study, enrolling up to 24 healthy volunteer subjects. It willB:7.75”
T:7.5”
S:7.375”
support that may help you
change the possibilities
in hemophilia
S:4.75”
Discover support with SevenSECURE®.
Visit ChangingPossibilities-US.com
to learn more about the program
and enroll today.
Novo Nordisk Inc., 800 Scudders Mill Road, Plainsboro, New Jersey 08536 U.S.A.
SevenSECURE® and Changing Possibilities in Hemophilia® are registered trademarks
of Novo Nordisk Health Care AG.
© 2013 Novo Nordisk
Printed in the U.S.A.
0513-00015474-2
May 2013
NOSV3J1482_CPiH_Patient_Ad_HALF_r6_PP.indd 1
Page 7
5/31/13 12:05 PM
Bloodlines • Volume 34 Issue 1
T:4.875”
When you or your child has a bleeding disorder, the costs can
add up quickly. SevenSECURE® is a valuable tool that may help you
with health insurance, educational grants and scholarships, health
and fitness memberships, and reimbursement assistance for medical
and dental expenses. And it’s now available online, so support
is always a click away.
HEMOPHILIA
COUNCIL
OF
HEMOPHILIA
CALIFORNIA
COUNCIL OF
V o l u m e V ICALIFORNIA
Issue 1
Vo l u m e V I
Issue 1
Advocacy
Update
Advocacy Update
February 2014
February 2014
CCS Program Getting Stakeholder Review
CCS Program Getting Stakeholder Review
The CA Department of Health Care Services plans to host a CCS Stakeholder Workgroup in early 2014
andThe
HCC
secured a seat
at thatCare
table.Services plans to host a CCS Stakeholder Workgroup in early 2014
CAhas
Department
of Health
and HCC has secured a seat at that table.
The CA Children’s Services Program (CCS) has been providing specialized health insurance coverage for infants and children in CA since the
early
The program
provides
coverage
for children
up toinsurance
age 21 years
of agefor
whose
families
have annual
The1920’s.
CA Children’s
Services
Program
(CCS)and
hascase
beenmanagement
providing specialized
health
coverage
infants
and children
in CAadjusted
since the
gross
incomes
of
$40,000
or
less.
Hemophilia
is
one
of
the
conditions
covered
under
the
benefit
regulations.
Children
who
qualify
for the
Mediearly 1920’s. The program provides coverage and case management for children up to age 21 years of age whose families have annual
adjusted
Cal
Program
who
have
hemophilia
can
also
qualify
for
CCS
coverage.
CCS
Providers
must
meet
strict
State
standards.
gross incomes of $40,000 or less. Hemophilia is one of the conditions covered under the benefit regulations. Children who qualify for the MediCal Program who have hemophilia can also qualify for CCS coverage. CCS Providers must meet strict State standards.
Medi-Cal eligible children with CCS eligible conditions, like hemophilia, are “carved out” of Medi-Cal Managed Care plans until January
1, 2016.
Some
have talked
about
CCS inconditions,
sooner thanlike
thathemophilia,
date. HCC are
opposes
efforts
dramatic
changes
to CCS,
but isJanuary
open to
Medi-Cal
eligible
children
withfolding
CCS eligible
“carved
out”toofmake
Medi-Cal
Managed
Care
plans until
discussing
these
issues
with
State
leaders
in
the
CCS
Stakeholder
Workgroup
process
and
in
other
forums.
1, 2016. Some have talked about folding CCS in sooner than that date. HCC opposes efforts to make dramatic changes to CCS, but is open to
discussing these issues with State leaders in the CCS Stakeholder Workgroup process and in other forums.
10% Medi-Cal Pharmacy Cuts Have Been Blocked
10% Medi-Cal Pharmacy Cuts Have Been Blocked
We are pleased to report that the federal CMS Agency has approved the State’s State Plan Amendment (SPA) to exempt clotting factor from
theWe
10%
HCC had
fought
hardhas
since
2011 tothe
block
theseState
cutsPlan
to our
pharmacy providers.
Our voices
were
heard!
For
areMedi-Cal
pleased toPharmacy
report thatCuts.
the federal
CMS
Agency
approved
State’s
Amendment
(SPA) to exempt
clotting
factor
from
the
latest
on
Medi-Cal,
go
to
www.dhcs.ca.gov
the 10% Medi-Cal Pharmacy Cuts. HCC had fought hard since 2011 to block these cuts to our pharmacy providers. Our voices were heard! For
the latest on Medi-Cal, go to www.dhcs.ca.gov
-By Terri Cowger Hill, HCC Legislative Advocate
-By Terri Cowger Hill, HCC Legislative Advocate
What to Expect at Washington Days 2014
WhatDays
to registration
Expectopened
at Washington
Days
It is that time of year again! Washington
earlier this month, and
so far2014
42 chapters will be represented at our annual
advocacy
Through
yourWashington
involvementDays
and that
of our chapters,
NHF will
to Capitol
to chapters
meet with
representatives
from
all annual
over the
It is thatevent.
time of
year again!
registration
opened earlier
thistake
month,
and so Hill
far 42
will
be represented
at our
country
as
we
advocate
on
behalf
of
the
bleeding
disorders
community.
Last
year
more
than
300
consumers
attended
and
we
are
anticipating
a
advocacy event. Through your involvement and that of our chapters, NHF will take to Capitol Hill to meet with representatives from all over the
similar
turnout
this
year.
country as we advocate on behalf of the bleeding disorders community. Last year more than 300 consumers attended and we are anticipating a
similar turnout this year.
Washington Days 2014 will take place Wednesday, February 26, through Friday, February 28. We will begin with registration on Wednesday
at 2:30
PM andDays
host a2014
First-Time
Attendee
Training atFebruary
3:30 PM.26,
Onthrough
Thursday,
we spend
the day
on Capitol
Hill,
making
visits toonCongressional
Washington
will take
place Wednesday,
Friday,
February
28. We
will begin
with
registration
Wednesday
members’
offices.
Friday
we
conclude
our
time
with
a
State
Advocacy
Training,
which
wraps
up
at
11:45am.
at 2:30 PM and host a First-Time Attendee Training at 3:30 PM. On Thursday, we spend the day on Capitol Hill, making visits to Congressional
members’ offices. Friday we conclude our time with a State Advocacy Training, which wraps up at 11:45am.
All meetings and trainings will be held at the Crystal Gateway Marriott, located at 1700 Jefferson Davis Highway in Arlington, Virginia. The
closest
airport toand
ourtrainings
hotel is Reagan
National
All meetings
will be held
at the(DCA).
Crystal Gateway Marriott, located at 1700 Jefferson Davis Highway in Arlington, Virginia. The
closest airport to our hotel is Reagan National (DCA).
If you have any questions or concerns, please contact NHF’s Public Policy Team: [email protected].
If you have any questions or concerns, please contact NHF’s Public Policy Team: [email protected].
TENTATIVE AGENDA:
THURSDAY, FEBRUARY 27, 2014
7:00
a.m. – 7:45
a.m. Breakfast
TENTATIVE AGENDA:
THURSDAY,
FEBRUARY
27, 2014
WEDNESDAY, FEBRUARY 26, 2014
7:30
a.m.
Participants
to Depart for Capitol Hill
7:00 a.m. – 7:45 a.m. Breakfast
2:30
p.m. – 5:00 FEBRUARY
p.m. Registration
9:00
10:00 a.m.toLegislative
WEDNESDAY,
26, 2014
7:30 a.m.
a.m. –Participants
Depart forBriefing
Capitol Hill
3:30 p.m. – 4:30 p.m. First-Time Attendee Training
10:00
a.m.
–
4:30
p.m.
Legislative
Appointments
2:30 p.m. – 5:00 p.m. Registration
9:00
a.m.
–
10:00
a.m.
Legislative
Briefing
5:00
Days Training
3:30
to Hotel
3:30 p.m.
p.m. –– 6:30
4:30 p.m.
p.m. Washington
First-Time Attendee
Training
10:00p.m.
a.m.––5:00
4:30p.m.
p.m.Participants
Legislative Return
Appointments
6:30
p.m.
–
8:00
p.m.
Welcome
Reception
4:00p.m.
–
6:00
p.m.
Post-Appointment
Check-In
5:00 p.m. – 6:30 p.m. Washington Days Training
3:30 p.m. – 5:00 p.m. Participants Return to Hotel
6:30
p.m.––6:00
8:30p.m.
p.m.Post-Appointment
State Advocacy Recognition
6:30 p.m. – 8:00 p.m. Welcome Reception
4:00p.m.
Check-In Dinner
(Sponsored by Pfizer and Hemophilia Association
6:30 p.m. – 8:30 p.m. State Advocacy Recognition Dinner
of
the Capitol
(Sponsored by Novo Nordisk)
(Sponsored
byArea)
Pfizer and Hemophilia Association
of the Capitol Area)
(Sponsored by Novo Nordisk)
The Hemophilia Council of California exists to provide public information and to coordinate activities which will promote and ensure the welfare of all California organizations representing persons with
coagulation disorders and which will directly or indirectly improve the quality of life for all persons with coagulation disorders and their families in the state of California.
The Hemophilia Council of California exists to provide public information and to coordinate activities which will promote and ensure the welfare of all California organizations representing persons with
Page 8
coagulation disorders and which will directly or indirectly improve the quality of life for all persons with coagulation disorders and their families in the state of California.
Bloodlines • Volume 34 Issue 1
Chapter Updates…
HFNC
Make Your Voice Heard
HCC Advocacy Update
HFSC
HFSC Continues to Honor the Memory of Chris
Pitkin
People living with bleeding disorders have different issues
to deal with each day over and above what other people
This year the scholarship committee chose our winners
have in their daily routine. One can let a lifelong chronic
out of a broad spectrum of applicants. We are delighted to
disorder become overwhelming or rather embrace this special
announce Dustin Horta and Joshua Kim as our 2013 Mark
challenge as something that makes them unique and learn
Pitkin scholarship winners.
how to manage it with powerful outcomes. HFNC is here to
Dustin Horta is a hardworking and goal driven young
assist individuals and families in channeling their lives toward
man
who is currently attending Riverside Community
powerful outcomes.
College earning a degree in Nursing. He plans to
Each day families and individuals find strength in the
specialize in pediatric hematology. He is an Eagle Scout
support of others within this special community. Together
who has earned six Eagle Palms, a member of The Ventura
much has been done over the years to enable people living
Crew, and a Vigil Honor Member of the Order of the
with a bleeding disorder to live full creative lives. These
Arrow. He has completed hundreds of hours of community
opportunities have come to this generation because of the
service over the years for the Boy Scouts, his local church,
generations before us who have made their voices heard in
and the City of Riverside.
various settings over many years. The national organizations
Joshua Kim has shown tremendous ability in tennis
speaking on behave of the bleeding disorder community
and
displays an exceptional level of maturity which
continue to provide opportunities for each of us to get
makes him a role model to all of his peers. He is well
involved in stating our needs to
liked and respected for his
the change makers. Our local
wonderful sense of humor and
Foundation and the Hemophilia
IMP
O
RTANT
E
VE
NT
S
…
great sportsmanship. He was
Council of California provides this
recently accepted under the Early
opportunity locally. We cannot rely
Decision 2 Program of Pomona
HASDC Family Information Day
3/15
on the work of so many in the past
College and plans to attend
HFNC NHF Walk
4/19
to insure continued progress for
medical school and has a strong
our cause. Each of us today has to
CCHF Golf Tournament
4/28
interest in neuroscience.
continue to speak out for what we
HFSC Family Information Day
5/3
need now and to protect the futures
We would also like to
Future Leader Program
5/5-5/7
needs of our children.
recognize our honorable
Legislative Day
5/7
mentions: Brenda Santa Cruz,
Please consider adding your
Ida Padilla, Calvin Dutcher, and
voice to many others at our HCC
Raphael & Gabriel Forbes.
Leg Day on May 7 in Sacramento.
If you are a teen join with other teens in leading the Leg Day
CCHF
visits with our law makers by registering as part of the Future
Leaders team on May 5 & 6. Let’s continue to make our
Showing the love
VOICES HEARD.
Valentine’s Day weekend offered more than one
opportunity
to show the love for Central California’s
HASDC
Foundation. Over 700 people gathered on February 15
Change is Good
for the Foundation’s crab-feed fundraiser at the Elk’s
lodge in Sacramento’s Pocket neighborhood. Good
The Hemophilia Association of San Diego County is
food, fellowship and fun were had by all who attended.
pleased to announce that we are moving camp locations for
Live music was provided by the Chris Gardener band;
2014. We have really enjoyed going to Camp Marston for
lucky sweepstakes winners took home plane tickets, a
the past 10+ years but we have come to the conclusion that
40” high-def flat screen television; and, a beautiful Bay
it is time for a change. This year we will be going to Camp
Area vacation weekend. Attendees were also offered the
Whittle in Big Bear, CA. We are looking forward to a new
opportunity to participate in the silent auction, offering
location that provides a great variety of activities for the
themed baskets, vacation homes and jewelry; as well
kids from horseback riding to water activities at Big Bear
as the chance to win some delectably soft bakery items;
Lake.
or, some cold, hard cash. Bottom line, everybody who
Camp will take place August 10-15, 2014. If you have a
attended went home a winner. Thank you to all of our
child that is interested in attending our summer camp please
members, sponsors and attendees for making the event
do not hesitate to contact us!AM.
such a success. We couldn’t do it without you!
HCC Board
Members
CCHF: Sean Hubbert, Kate Muir, Tracey Huntington
HFNC: Michelle Gilmore, Randal Curtis, Shelley Jajeh
HFSC: Edmund Merino, Jorge Catedral
HASDC: Yvette Bryant, Shelley Flores, Tony Maynard
Adocacy Update is published periodically by the Hemophilia Council of California, a 501(c)3 nonprofit organization. 4629 Whitney Ave., Suite 1, Sacramento, CA 95821. Ph: 916-498-3780.
Page 9
Bloodlines • Volume 34 Issue 1
HEMOPHILIA
COUNCIL
OF
HEMOPHILIA
CALIFORNIA
COUNCIL OF
v o l u m e n VCALIFORNIA
I
edición 1
volumen VI
edición 1
Promoción
de
actualización
Promoción de actualización
febrero 2014
febrero 2014
Programa CCS Obtiene revicion del grupo de invercionistas.
Obtiene
delpara
grupo
de invercionistas.
El Departamento de Programa
Servicios de CCS
Salud CA
planearevicion
ser anfitrion
el grupo
de invercionistas CCS a principios del
2014 y el CHC ha asegurado un asiento para este evento.
El Departamento de Servicios de Salud CA planea ser anfitrion para el grupo de invercionistas CCS a principios del
El yPrograma
deasegurado
Servicios para
niños en
California
(CCS) ha estado proporcionando la cobertura de seguro de salud
2014
el CHC ha
un asiento
para
este evento.
especializado para bebés y niños en California desde principios de 1920 . El programa proporciona una gestión de la
El Programa
de de
Servicios
para la
niños
(CCS)familias
ha estado
proporcionando
la cobertura
de$40,000
seguro de
salud
cobertura
en casos
niños hasta
edadendeCalifornia
21 años cuyas
tienen
ingresos totales
por año de
o meespecializado
paraesbebés
y niños
en California
desde principios
de 1920 . El
proporciona
una califican
gestión de
la
nos. La hemofilia
una de
las condiciones
contempladas
en la normativa
deprograma
beneficios.
Los niños que
para
cobertura
en
casos
de
niños
hasta
la
edad
de
21
años
cuyas
familias
tienen
ingresos
totales
por
año
de
$40,000
o
meel programa de Medi -Cal que tienen hemofilia también pueden calificar para cobertura de CCS. Proveedores de CCS
nos.
hemofilia
una deestrictas
las condiciones
contempladas en la normativa de beneficios. Los niños que califican para
debenLacumplir
conesnormas
del estado.
el programa de Medi -Cal que tienen hemofilia también pueden calificar para cobertura de CCS. Proveedores de CCS
Niños
elegibles
Medi-Cal
conestado.
condicion de elegibilidad por CCS, como la hemofilia, an sido “removidos “
deben
cumplir
con para
normas
estrictasy del
de los planes administrados por Medi -Cal hasta 1 de enero de 2016. Y a abido platicas con CCS para cambiar a una
Niños
condicionpara
de elegibilidad
por drásticos
CCS, como
sido
“removidos
“
fecha
maselegibles
cercana. para
HCCMedi-Cal
se opone ya con
los esfuerzos
hacer cambios
en la
la hemofilia,
CCS, pero an
está
abierto
a discutir
de
los
planes
administrados
por
Medi
-Cal
hasta
1
de
enero
de
2016.
Y
a
abido
platicas
con
CCS
para
cambiar
a
una
estos temas con los líderes estatales en el proceso “CCS Stakeholder Workgroup” y en otros foros .
fecha mas cercana. HCC se opone a los esfuerzos para hacer cambios drásticos en la CCS, pero está abierto a discutir
Lostemas
recortes
a farmacias
para
Medi-Cal
an sido
bloqueados.
Por el Abogado
Legislativo
estos
con del
los 10%
líderes
estatales en
el proceso
“CCS
Stakeholder
Workgroup”
y en otros
foros . del HCC Terri
Cowger Colina
Los recortes del 10% a farmacias para Medi-Cal an sido bloqueados. Por el Abogado Legislativo del HCC Terri
Tenemos
el agrado de informar que la Agencia federal CMS ha aprobado la Modificación del Plan Estatal (SPA)
Cowger
Colina
para detener el 10% a farmacias que asisten a Medi-Cal. HCC a luchado desde 2011 para detener estos recortes a nuesel agrado
de informar
que la voces
Agencia
federal CMSPara
ha aprobado
del Plan
Estatal (SPA)
trosTenemos
proveedores
de farmacias
. Nuestras
se escucharon!
lo últimolaenModificación
Medi-Cal, vaya
a www.dhcs.ca.gov
para detener el 10% a farmacias que asisten a Medi-Cal. HCC a luchado desde 2011 para detener estos recortes a nuestros proveedores de farmacias . Nuestras voces se escucharon! Para lo último en Medi-Cal, vaya a www.dhcs.ca.gov
-Por La Abogada Legislativa del HCC Terri Cowger Hill
-Por La Abogada Legislativa del HCC Terri Cowger Hill
Regístrese ahora para “Washington Days 2014”
Regístrese ahora para “Washington Days 2014”
Es esa época del año otra vez ! Inscripción para
“Washington Days” abrió a principios de este mes , y hasta
Es
esa 42
época
del año otraestarán
vez ! Inscripción
paraen nuestro
ahora
organizaciones
representadas
“Washington
Days”
abrió
a
principios
de
este
mes , y hasta
evento anual de promoción . A través de su participación
y
ahora
42
organizaciones
estarán
representadas
en nuestro
la de nuestras organizaciones , el Fondo Nacional
de Salud
evento
deelpromoción
. A través
de su
y
(NHF) anual
visitara
Capitolio para
reunirse
conparticipación
representantes
la
nuestras
el FondodeNacional
de Salud
dede
todo
el paísorganizaciones
para abogar en,nombre
la comunidad
(NHF)
visitarasanguineos.
el CapitolioEl
para
con trastornos
añoreunirse
pasadocon
másrepresentantes
de 300
de
todo
el
país
para
abogar
en
nombre
de
la
comunidad de
consumidores asistieron y esperamos una participacion
con
igualtrastornos
cantidad.sanguineos. El año pasado más de 300
consumidores asistieron y esperamos una participacion de
“Washington
igual cantidad.Days 2014” se llevará a cabo el miércoles
, 26 de Febrero hasta el viernes, 28 de febrero. Vamos
“Washington
Days
2014” se
a cabo
miércoles
a comenzar con
el registro
el llevará
miércoles
a lasel2:30
pm y
,capacitacion
26 de Febrero
hasta
el
viernes,
28
de
febrero.
para participantes por primera vezVamos
a las 3:30
aPM.
comenzar
conpasaremos
el registro el
el día
miércoles
a las 2:30para
pm y
El jueves,
en el Capitolio,
capacitacion
para
participantes
por
primera
vez
a
las
3:30
visitar las oficinas de los miembros del Congreso . Viernes
PM.
El
jueves,
pasaremos
el
día
en
el
Capitolio,
para
concluimos nuestro evento con una reunion de abogadia
visitar
de alos
estatal,las
queoficinas
concluye
lasmiembros
11:45 am.del Congreso . Viernes
concluimos nuestro evento con una reunion de abogadia
Todas las
de capacitación
se llevarán
estatal,
quereuniones
concluyeyacursos
las 11:45
am.
a cabo en el Crystal Gateway Marriott , ubicado en el
Todas
las reuniones
cursos de ,capacitación
llevaránEl
1700 Jefferson
Davisy Highway
en Arlington,seVirginia.
aaeropuerto
cabo en elmás
Crystal
Gateway
Marriott
,
ubicado
enNational
el
cercano a nuestro hotel es Reagan
1700
Jefferson
Davis
Highway
,
en
Arlington,
Virginia.
El
Airport (DCA).
aeropuerto más cercano a nuestro hotel es Reagan National
Si
usted(DCA).
tiene alguna pregunta o inquietud , por favor
Airport
contactar al Equipo de Política Pública del Fondo Nacional
Si
alguna
pregunta o inquietud , por
de usted
Saludtiene
(NHF)
: [email protected]
. favor
contactar al Equipo de Política Pública del Fondo Nacional
de Salud (NHF) : [email protected] .
AGENDA TENTATIVA:
Miércoles, TENTATIVA:
26 de Febrero 2014
AGENDA
2:30pm-5:00pm
Miércoles,
26 deRegistracion.
Febrero 2014
3:30pm-4:30pm
Capacitacion
2:30pm-5:00pm Registracion. para participantes por
primera vez.
3:30pm-4:30pm Capacitacion para participantes por
5:00pm-6:30pm
Capacitacion “Washington Days”
primera vez.
6:30pm-8:00pm
de “Washington
Bienvenida. Days”
5:00pm-6:30pm Recepción
Capacitacion
(Patrocinado porRecepción
Pfizer y la de
Asociación
de Hemofilia del
6:30pm-8:00pm
Bienvenida.
Área del Capitolio
(Patrocinado por Pfizer y la Asociación de Hemofilia del
Área del Capitolio
Jueves, 27 de febrero 2014
7Jueves,
am-7:45
Desayuno.
27 am
de febrero
2014
07:30am
Los
participantes
7 am-7:45 am Desayuno. partiran al Capitolio.
09am-10
am Sesion
de informacion
07:30am Los
participantes
partiran al legislativa.
Capitolio.
10:00 am-4:30pm
Citas
Lesgislativas.legislativa.
09am-10
am Sesion
de informacion
3:30pm-5:00pm
participantes
regresaran al hotel.
10:00
am-4:30pmLos
Citas
Lesgislativas.
4:00pm - 6:00pmLos
Registracion
de eventos
futuros.
3:30pm-5:00pm
participantes
regresaran
al hotel.
6:30pm-8:30pm
Cena
de
Reconocimiento
para
la
4:00pm - 6:00pm Registracion de eventos futuros.
abogacia del estado.
6:30pm-8:30pm Cena de Reconocimiento para la
(Patrocinado
por Novo Nordisk)
abogacia del estado.
(Patrocinado por Novo Nordisk)
El concilio para la hemofilia en california existe para proveer información publica y para coordinar actividades las cuales promoverán y aseguraran el bienestar de todas las organizaciones de California que representan
a personas con enfermedades de coagulación y las cuales directamente o indirectamente mejoraran la calidad de vida para todas las personas con enfermedad de coagulación y sus familias en el estado de California.
El concilio para la hemofilia en california existe para proveer información publica y para coordinar actividades las cuales promoverán y aseguraran el bienestar de todas las organizaciones de California que representan
a personas
Page 10 con enfermedades de coagulación y las cuales directamente o indirectamente mejoraran la calidad de vida para todas las personas con enfermedad de coagulación y sus familias en el estado de California.
Bloodlines • Volume 34 Issue 1
Capítulo Actualizaciones…
HFNC
HCC Promoción de actualización
HFSC
Haga oír su voz.
HFSC continúa honrando la memoria de Chris Pitkin
Las personas que viven con trastornos de la coagulación
sanguinea tienen diferentes problemas que tratar cada día
más allá de lo que otras personas tienen en su rutina diaria.
Este año, el comité de becas eligió a los ganadores de un
Uno puede dejar que un trastorno crónico de toda la vida
amplio grupo de los solicitantes. Estamos muy contentos de
anunciar Dustin Horta y Joshua Kim como nuestros ganasea abrumadora o más bien aceptar este reto como algo
dores de becas 2013 de Mark Pitkin.
muy especial que los hace únicos y aprender a manejar los
Dustin Horta es un joven trabajador y enfocado en sus
resultados con gran valor. HFNC está aquí para ayudar a
metas. Él actualmente asiste Riverside Community Colindividuos y familias en la canalización de sus vidas hacia
lege para obtener un título en enfermería . Él planea
unos buenos resultados.
especializarse en hematología pediátrica. Él es un Eagle
Cada día las familias y las personas han encontrado la
Scout que se ha ganado seis Eagle Palms, es miembro de
fuerza y el apoyo de los demás dentro de esta comunidad
la tripulación de Ventura , y miembro honorario de vigilia
especial. Juntos se ha hecho mucho en los últimos años
de la Orden de la Flecha . Ha completado cientos de horas
de servicio comunitario en los últimos años para los Boy
para que las personas que viven con un trastorno de la
Scouts, la iglesia local, y la ciudad de Riverside .
coagulación sanguinea vivan una vida plena y creativa .
Joshua Kim ha demostrado una tremenda habilidad en
Estas oportunidades han llegado a esta generación porque
las generaciones anteriores ya habian hecho oír sus voces en el tenis y muestra un nivel excepcional de madurez que lo
varios escenarios durante muchos años. Las organizaciones convierte en un modelo a seguir para todos sus compañeros. Él es muy querido y respetado por su maravilloso sennacionales que hablan por la comunidad de trastorno
hemorrágico siguen proporcionando oportunidades para que tido del humor y un gran espíritu deportivo. Recientemente
fue aceptado por “Early Decisition 2 Program” de Pomona
cada uno de nosotros pueda participar y afirmar nuestras
College, tiene previsto asistir a la escuela de medicina y
necesidades a los representantes.
tambien tiene un fuerte interés
Nuestra Fundación local y el
en la neurociencia.
Consejo de Hemofilia de California
También queremos reconoEventos Importantes
ofrece esta oportunidad a nivel
cer
nuestros mencionados de
HFNC NHF Caminata . 4/19
local. No podemos confiar en el
honor : Brenda Santa Cruz ,
CCHF Torneo de Golf . 4/28
trabajo de tantas personas en el
Ida Padilla , Calvin Dutcher ,
pasado para asegurar un progreso
HFSC Dia parinformacion
y Rafael y Gabriel Forbes.
continuo por nuestra causa. Cada
familiar
5/3
uno de nosotros hoy en día tenemos
Programa para futuros
que seguir hablando claro de lo que
CCHF
lideres
5/5 - 5/7
necesitamos ahora y para proteger
Dia Legislativo
5/7
las necesidades para el futuro de
Mostrando el Amor
nuestros hijos.
Por favor, considere agregar su voz
con muchas de nosotros en el Día de “HCC Leg” , el 7 de
Este fin de semana de San Valentín ofreció más de una
mayo en Sacramento. Si usted es un adolescente puede unirse
oportunidad para mostrar el amor por la Fundación del
con otros adolescentes en la conducción del Día “HCC Leg”
Centro de California. Más de 700 personas se reunieron el
15 de febrero para recaudar fondos en nuestra cena anual
junto con nuestros legisladores para registrarse como parte
de la Fundación en el salon del Elk en la comunidad de
del equipo de Futuros Líderes del 5 de mayo y 6 . Vamos a
Sacramento. Buena comida, el compañerismo y la divercontinuar haciendo oír nuestra voz .
sión se sentia entre todos los que asistieron. La música en
HASDC
vivo fue proporcionado por la banda de Chris Gardener;
ganadores de nuestro sorteo se llevaron a casa boletos de
HASDC Día de Información Familiar
avión, una televisión de alta definición de pantalla plana
de 40 pulgadas;. Y un fin de semana en el area de la bahia.
Los asistentes también tuvieron la oportunidad de parLa Asociación de Hemofilia del Condado de San Diego le
ticipar en una subasta silenciosa, ofreciendo canastas con
invita a nuestra Reunión Anual numero 41 y al Día de Inforregalos variados, casas para vacacionar y joyas, así como
mación Familiar. Con sesiones educativas sobre Intercambio
la oportunidad de ganar artículos de reposteria, y dinero
de Salud, Investigación, enfermedad de Von Willebrand, y Vida en efectivo. En pocas palabras, todos los que asistieron
Saludable.
fueron ganadores. ¡Gracias a todos nuestros socios, patrocinadores, y los asistentes por aver hecho este evento
Nuestra Reunión Anual y Día de Información Familiar se
llevará a cabo el día 15 de marzo en el San Diego Safari Park, un éxito. No se ubiera podido hacer sin ustedes!
15500 San Pasqual Valley Road, empezando desde las 8:00
AM.
HCC MIEMBROS
DEL CONSEJO
CCHF: Sean Hubbert, Kate Muir, Trace Huntington
HFNC: Michelle Gilmore, Shelley Jajeh, Randal Curtis
HFSC: Edmund Merino, Jorge Catedral
HASDC: Yvette Bryant, ShelleyFlores, Tony Maynard
Adocacy Update is published periodically by the Hemophilia Council of California, a 501(c)3 nonprofit organization. 4629 Whitney Ave., Suite 1, Sacramento CA 95821. Ph: 916-498-3780.
Page 11
Bloodlines • Volume 34 Issue 1
Puzzling
Questions?
Learn how the pieces fit with
August 17 – 23, 2014
Visit www.koate-dviusa.com
to learn more about Koāte-DVI
©2014 Kedrion Biopharma, Inc. All Rights Reserved. Printed in USA KT-0051-00-2014
San Francisco to San Diego
Be a Rider • Sponsor a Rider
More info: www.ccr4h.org
B:7.75”
For questions, contact Heidi Scanlan at HCC
T:7.5”
Phone: (916) 498-3780 • Fax: (916) 498-3782 • [email protected]
S:7.375”
CHRIS FENNICKS
Chris tiene hemofilia A
con inhibidores
asistencia que puede
ayudarlo a cambiar las
posibilidades de la hemofilia
Novo Nordisk Inc., 800 Scudders Mill Road, Plainsboro, New Jersey 08536 EE. UU.
SevenSECURE® y Changing Possibilities in Hemophilia® son marcas registradas
de Novo Nordisk Health Care AG.
© 2013 Novo Nordisk
Impreso en los EE. UU.
0613-00016306-2
Junio de 2013
Page 12
NOSV3J1482_CPiH_Patient_ESP_Ad_HALF_r9_PP.indd 1
Bloodlines • Volume 34 Issue 1
6/24/13 10:29 AM
T:4.875”
Descubra la ayuda con SevenSECURE®.
Visite ChangingPossibilities-US.com
para obtener más información sobre
el programa e inscríbase hoy mismo.
S:4.75”
Cuando usted o su hijo tiene un trastorno hemorrágico, los costos
pueden aumentar rápidamente. SevenSECURE® es un recurso valioso
que puede ayudarlo con el seguro de salud, subvenciones y becas
educativas, membresías en gimnasios y para el cuidado de la salud,
y asistencia para el reembolso de gastos médicos y dentales. Y ahora
se encuentra disponible en línea, por lo que la ayuda está siempre a
un clic de distancia.
Having issues
with co-pays
or gaps in
coverage for your
hemophilia A
treatment ???
We may be able to help.
Bayer offers a range of programs that can help you navigate insurance questions about
your hemophilia A treatment. If you’re having issues with co-pays or gaps in coverage, we
may be able to offer assistance. Speak with one of our case specialists to find out more.
Call 1-800-288-8374 and press 1 to speak to a trained insurance specialist!
Bayer and the Bayer Cross are registered trademarks of Bayer.
© 2013 Bayer HealthCare Pharmaceuticals Inc. All rights reserved. 04/13 KN10000213A
Page 13
Bloodlines • Volume 34 Issue 1
For the treatment of von Willebrand Disease
von Willebrand
Factor/Coagulation
Factor VIII Complex
(Human)
I will take my kids to the beach today
I will wear my new white sundress
I will expect more from my von Willebrand factor treatment
I will take control of my VWD
wilate® is a von Willebrand Factor/Coagulation Factor VIII Complex (Human) indicated for
the treatment of spontaneous and trauma-induced bleeding episodes in patients with
severe von Willebrand disease (VWD), as well as patients with mild or moderate VWD in
whom the use of desmopressin is known or suspected to be ineffective or contraindicated.
The Power to Control VWD
www.wilateusa.com
Important safety information:
wilate® is contraindicated for individuals with a history of anaphylactic or severe systemic
reaction to human plasma-derived products, any ingredient in the formulation, or components
of the container. Thromboembolic events have been reported in VWD patients receiving
coagulation factor replacement therapies. FVlll activity should be monitored to avoid
sustained excessive FVlll levels. wilate® is made from human plasma. The risk of infectious
agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease agent, cannot be
completely eliminated. The most common adverse reactions to treatment with wilate® in
patients with VWD have been urticaria and dizziness. The most serious adverse reactions to
treatment with wilate® in patients with VWD have been hypersensitivity reactions.
Please see the Highlights of Prescribing Information on the adjacent page.
© 2013, Octapharma USA, Inc. All rights reserved.
Date of preparation 04/13. WIL-026-CAD
Page 14
Bloodlines • Volume 34 Issue 1
To report suspected
adverse reactions,contact:
Octapharma USA, Inc.
866-766-4860 or
FDA at 1-800-FDA-1088 or
www.fda.gov/medwatch
Page 15
Bloodlines • Volume 34 Issue 1
Hemophilia Association of San Diego County
3550 Camino Del Rio North, Suite 105
San Diego, California 92108
Non-Profit Org.
U.S. Postage
PAID
Permit No. 589
San Diego, CA
hasdc's upcoming events ~ 2014
For more information about any of HASDC’s upcoming events, please visit our website at www.hasdc.org and click on “Upcoming Events,” call us at (619) 325-3570 or e-mail us at [email protected]
Inhibitor Family Camp at Painted Turtle, CA
April 11-14, 2014 (inhibitorfamilycamp.org)
Future Leaders in Sacramento, CA
May 5-7, 2014 (HCC EVENT)
Legislative Day in Sacramento, CA
May 7, 2014 (HCC EVENT)
Annual Golf for a Cure Tournament
Tuesday, May 20, 2014 at The Crosby
Teen Leadership Camp
May 24-26, 2014 (campus by the sea on Catalina Island, CA)
Pulse on the Road
Saturday, June 28, 2014 at San Diego Zoo
Camp Pascucci Staff Training Day
August 9th at Camp Whitle in Big Bear, CA
Camp Pascucci
August 10-15, 2014 at Camp Whitle in Big Bear, CA
Annual Coastal Ride for Hemophilia
August 16-23, 2014
Homecoming BBQ
August 23, 2014
Hispanic Heritage Month Event: TBD
September - date and location TBD
NHF Annual Meeting
September 17-20, 2014 (NHF EVENT) ~ Washington DC
Hemophilia Walk
October 4, 2014 at NTC Park in Liberty Station
Annual Holiday Party
December - date and location TBD
Page 16
Bloodlines • Volume 34 Issue 1