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lifeline lifeline - Florida Hemophilia Association

lifeline
The Official Newsletter of the Florida Hemophilia Association
FAll 2011
Inside
Executively Speaking
Page 2
Community Corner,
Celebrating Hispanic
Heritage
Page 3-4
22nd Annual Swing for the Kids
FHA Golf Tournament
22nd Annual Swing for the
Kids Golf Tournament
Page 5-6 and 9
NHF News: Research
Breakthrough in Gene
Therapy for Hemophilia B
Page 8
In Memory of
James Labbe
It is with deep sympathy
we lay to rest a member
of our bleeding disorder
community, James Labbe.
Thank you to Marilyn
Ross and Ilene Pastron
for their donations in
James’ memory.
SAVE THE DATE
NHF Washington Days
March 7-9
HFA Annual Meeting
March 30 – 31
8th Annual Volley for
a Cure
April 14
2nd Annual Walk in the
Jungle
April 28
1st Place – Ricky’s Oil Service - Gregg Hunsberger, Frank Vidosola, Chris Ricci, Kenny BrehM
O
n Monday, December 12, 2011 the
Florida Hemophilia Association
hosted its 22nd Annual Swing
for the Kids Golf Tournament at the
Deering Bay Yacht & Country Club. The
tournament was re-scheduled from the
original date of October 17 due to torrential
rains in South Florida. Fortunately, the
rains stayed at bay until the tournament
was finished and almost everyone was
inside the clubhouse.
In spite of the change of date and
the economy, we had 124 golfers and
we raised over $75,000.00. All golfers
received a goody bag that included a golf
shirt generously donated by Perry Ellis
International. Before heading out to the
golf course everyone enjoyed a delicious
lunch provided by Sports Grill.
There were a number of contests
golfers could participate in including “Beat
the Pro”. For a small donation, golfers
could try to beat Perry on one of the par
three holes. No one could compete with
Perry’s drive on hole # 10 to make a holein-one! Too bad it didn’t count to win him
the Cadillac SRX which was sponsored by
Williamson Automotive Group.
Perry
raised an additional $1,000.00 for this
year’s tournament at the “Beat the Pro
hole”. Thank you Perry!
Congratulations to all the winners!
1st Place – Ricky’s Oil Service -
Chris Ricci, Gregg Hunsberger,
Frank Vidosola, Kenny Brehm
2nd Place – Buddy Miller, Rona Miller,
Robert Fernandez, George Fitzgerald
Continued on page 5
1
FALL 2011 • LIFELINE
ExecutivelySpeaking
It’s been an absolutely wonderful and very
busy year for us here at the Florida Hemophilia
Association. We hosted our first walk in March,
expanded some of our programing and have
had success in our fund-raising efforts, not an
easy task in today’s economy. With the support
and dedication of our members, sponsors and
contributors we’ve been able to grow as an organization.
As you read through this last newsletter of the year, you will
see some of the fun events that we’ve had this last quarter.
Next, we are pleased to announce new members to our Board
of Directors; Chris Brigman and Jon Salk. Chris is the Dean of Boys
at Florida Christian School in Miami and has a broad background
of community service with such organizations as the Police
Benevolent Association, Special Olympics and Jackson Memorial
Hospital. Chris has been an active volunteer for FHA for the past 4
years. He has raised funds for the chapter by organizing a “NonUniform Day” fund-raiser at his school. Chris and his wife Leidy
are the proud parents of three boys; Jacob, Justin, and John. Jon is
the President and Founder of Salk Marketing Group which he has
been operating for 10 years and has an extensive background of
community service. He has been heavily involved in fund-raising
with FHA for the past 3 years. Jon and his wife, Robyn (Co-Chair),
were instrumental in the inaugural walk at Jungle Island this past
spring. They are the proud parents of Justin and Carly.
In addition to adding some new Board members, I am happy
to announce the start of our new Walk Manager, Lisa Leventhal.
Lisa has been an active volunteer for our organization as the
co-chair of the “Volley for a Cure” Tennis fund-raiser for several
years. She has been very active at the Jewish Community Center
(JCC) as a Board member and has also been the Chair of their
“Special Needs Fundraiser” for over 7 years. Lisa is the mother
of three children, Nicole, Shanna and Ryan. She joins FHA with a
wealth of experience in fund-raising and great enthusiasm.
Please help us in welcoming Chris, Jon and Lisa!
Chris Brigman
Jon Salk
Lisa Leventhal
Lastly, we are planning an action packed filled calendar
for 2012. Save the date for our 2nd Annual Walk in Jungle
on April 28 and the Family Education Symposium in July. For
updated information and other happenings check it out on
www.floridahemophilia.org.
I look forward to seeing you soon!
Happy Holidays,
Debbi Adamkin
FHA Executive Director
Informe Ejecutivo
Para la Asociación de Hemofilia de Florida (FHA), este año ha
sido absolutamente maravilloso y de gran actividad.
Patrocinamos nuestra primera caminata en marzo,
expandimos algunos de nuestros programas y hemos tenido
éxito en nuestra recaudación de fondos, una empresa difícil
considerando la economía actual. Con la ayuda y dedicación
de nuestros miembros, patrocinadores y contribuyentes, hemos
logrado crecer como organización.
La lectura de este último boletín de noticias del año le
informará sobre algunos de los divertidos eventos que hemos
tenido el último trimestre. Adicionalmente, tenemos el agrado
de anunciar nuevos miembros en nuestra Junta Directiva; Chris
Brigman y Jon Salk. Chris es el Decano de Niños en la escuela
Florida Christian School en Miami, y tiene amplia experiencia en
servicios comunitarios en organizaciones como la Asociación
Benéfica de la Policía, las Olimpiadas Especiales y el Hospital
Jackson Memorial. Durante los últimos cuatro años, Chris ha
trabajado activamente como voluntario para la FHA. Ha recaudado
fondos organizando un “Día sin Uniforme” en su escuela. Él y su
esposa Leidy tienen tres encantadores hijos; Jacob, Justin, y John.
Jon es presidente y fundador del Salk Marketing Group, que ha
administrado durante diez años, y tiene amplia experiencia en
servicios comunitarios. Durante los últimos tres años ha trabajado
empeñosamente para recaudar fondos para la FHA. Tanto él como
su esposa, Robyn (copresidente), han sido instrumentales en la
2
FALL 2011 • LIFELINE
caminata inaugural en Jungle Island la primavera pasada. Son los
orgullosos padres de Justin y Carly.
Además de la adición de nuevos miembros del Directorio,
tengo el placer de anunciar el nombramiento de nuestra nueva
Organizadora de Caminatas, Lisa Leventhal. Lisa ha trabajado
enérgicamente como voluntaria para nuestra organización,
como copresidente de “Volley para una cura,” que durante años
recaudó fondos con tenis. Ha participado activamente en el Centro
Comunitario Judío (JCC) como miembro del Directorio, para el cual
presidió el evento “Recaudación de Fondos para Necesidades
Especiales” durante más de siete años. Lisa tiene tres hijos,
Nicole, Shanna y Ryan. Su ingreso a FHA aporta un rico caudal de
experiencia en recaudación de fondos, que viene acompañado de
su gran entusiasmo.
Por favor ayúdenos a dar la bienvenida a Chris, Jon y Lisa
(fotografiados arriba).
Para terminar, nuestro calendario para el 2012 está lleno de
actividades. Reserven el 28 de abril para nuestra segunda Caminata
Anual en Jungle Island, y recuerden el Simposio de Educación
Familiar en julio. Para más información y otros eventos, visite
www.floridahemophilia.org.
¡Espero verlos muy pronto!
Felices fiestas,
Debbi Adamkin
FHA Executive Director
Community Corner
Celebrating
Hispanic Heritage
T
his year we
doubled
the
fun by hosting
two Hispanic Heritage
Day Celebrations for
our Spanish speaking
families. The first took
place at the Las Vegas
Restaurant in Doral
on Saturday October
1, 2011. More than
90 Spanish speaking
participants heard a
presentation by Patricia
Espinosa from Baxter on
“The Power of Choices”.
The second one was on
November 4, 2011 at the Columbia Restaurant in Ybor
City. This was our first in Tampa and over 50 Spanish
speaking participants heard a presentation by Dr. Irmel
Ayala form All Children’s Hospital on “The Fundamentals
of Hemophilia and von Willebrand Disease.
To celebrate Hispanic tradition, parents and children
also enjoyed the traditional food, music and educational
games. It was a fun family evening that not only focused on
education, but provided an opportunity for families to connect
with one another and reinforced pride for their heritage.
Special thanks to the program sponsors:
Baxter and Octapharma.
Este año duplicamos la diversión al organizar dos
programas para nuestras familias de habla hispana con el
objeto de conmemorar el mes de la Hispanidad. El primer
programa tuvo lugar en el restaurante de Las Vegas en el
área del Doral (Miami) el día sábado, octubre 1 de 2011.
Más de 90 participantes latinos escucharon una conferencia
dictada por Patricia Espinosa de Baxter sobre el tema: “El
poder de las decisiones”. El Segundo programa se llevo
a cabo noviembre 4 de 2011 en el restaurante Columbia en
Ybor City, Tampa. Más de 50 participantes de habla hispana
escucharon una conferencia dictada por la Dra. Irmel Ayala
del All Children’s Hospital sobre el tema: “Fundamentos de
la Hemofilia y Enfermedad de von Willebrand”.
Para celebrar la tradición hispana, padres e hijos
disfrutaron también los alimentos tradicionales, música y
juegos educativos. Estos programas familiares no solo se
centran en ofrecer educación, pero también ofrecen una
oportunidad para que las familias se conozcan entre sí y
fortalezcan con orgullo su herencia hispana.
Un especial agradecimiento a los
patrocinadores de los programa:
Baxter y Octapharma.
Continued on page 4
LIFELINE • FALL 2011
3
Community Corner
Submitted by
Fernando Urdapilleta
Fernando and his Dad
4
FALL 2011 • LIFELINE
The trip to Dallas
for the CSL Behring
Junior
National
Championship
was
awesome! Everybody
was very nice to me
and my Dad. I played
baseball on Friday and
one of the coaches was
factor IX like me. The coaches helped me to learn to throw better and to hit
harder. I also made some new friends.
Saturday was the best day!!! In the morning, we got to meet C.J. Wilson
who is the starting pitcher of the Texas Rangers. He spent a lot of time with us
and was very friendly. I even got to ask him a question!
On Saturday afternoon we went to a huge stadium for the competition. I
did OK and it was fun and afterwards, everyone ate icees.
That night we all went to the awards ceremony. It was very fancy and
they gave all of us beautiful medals. I felt very proud and was so happy that I
got to participate!
We really enjoyed the event, thank you very much to the Florida
Hemophilia Association.
22nd Annual Swing for the Kids FHA Golf Tournament Continued from cover page
2nd Place – Buddy Miller, Rona Miller,
Robert Fernandez
3rd Place & Crystal Cup – Team Octapharma –
Alex Perez, Danny Izquierdo, Carlos Velez, Luis Luaces
Longest Drive – Burt Vinas
Closest to the Pin – Mike Newman
Putting Contest – Gary Destro
3rd Place & Crystal Cup – Team Octapharma
Alex Perez, Danny Izquierdo, Carlos Velez, Luis Luaces
A huge thank you goes out Myriam Lagomasino, Alex
Perez and Sasha Perez as the golf co-chairs and for all of
their hard work. A round of applause to everyone on the
golf committee and to the volunteers who helped out the
day of the event. This tournament would not have been
a success without their hard work and dedication. And
finally, we’d like to thank our sponsors and participants
whose generous donations made this year’s tournament “A
Hole in One”.
Co-Chairs Myriam Lagomasino, Sasha Perez, and Alex Perez
Continued on page 6
LIFELINE • FALL 2011
5
22nd Annual Swing for the Kids
FHA Golf Tournament
Perry Parker, golf pro, in action
22nd Annual Swing for the Kids
Golf Tournament Sponsors
Title Sponsor Baxter
Major Sponsors
Bayer Healthcare – CSL Behring – Pfizer
Corporate Sponsors
Novo Nordisk – Octapharma
Crystal Cup Sponsors
Coram Hemophilia Services
Curascript
Kedrion USA
Walgreen’s Infusion Services
Zuni Transportation
Par Sponsors
BioRx – Novis Pharmaceuticals
Hole Sponsors
Acker Morris Law Firm
In Memory of Daniel Carlin (Bob & Beth Carlin)
The John G. Espinosa Financial Group, LLC
Grifols, USA
Kahn Carlin & Company
Palmetto Bay Village Center
Perry Ellis International
CW Watts Communications Construction, Inc.
Jackson National Life Distributors LLC
Lunch Sponsor
Sports Grill
Whole Foods Market Coral Gables – Beverages/
Snacks
Chef David Schwadron Catering and Event Designdesserts
Sponsors continued on page 9
6
FALL 2011 • LIFELINE
Continued from page 5
Perry Parker, golf pro, in action
LIFELINE • FALL 2011
7
NHF News: Research Breakthrough in
Gene Therapy for Hemophilia B
Researchers from the United Kingdom (UK) and the U.S. have
made a breakthrough in hemophilia gene therapy. In a recently
published study, the team reported successfully treating six patients
with severe hemophilia B. The lead author of the study was Amit
C. Nathwani, MB, ChB, PhD, Department of Hematology, University
College London (UCL) Cancer Institute, London.
The UCL investigators used adeno-associated viruses (AAVs)
as delivery vehicles, or vectors, to carry the genetic codes that
trigger the production of the factor IX (FIX) protein. FIX is deficient in
hemophilia B patients. Ideally, AAVs deliver the genetic material into
living cells to sustain therapeutic effect without causing disease or
triggering significant immune responses.
Nathwani and his team reported that a single injection of the
gene therapy activated the production of small amounts of FIX-enough to allow four of the six subjects to cease treatment with
FIX concentrates. The other two patients continued treatment with
factor products but needed less frequent infusions. The patients have
continued to produce their own FIX for up to 22 months.
Over the last decade, one of the major focuses for researchers
has been on developing optimal AAVs. These viruses are often favored
because patients have little or no immunity to them. Further, AAVs
often target liver cells, which manufacture FIX. One potential drawback
is long-term viability as liver cells to do not live indefinitely and are slow
to regenerate, which may affect the duration of the therapy.
The AAVs for this study were prepared by a team from the St.
Jude Children’s Research Hospital in Memphis, TN. The patients
were recruited and treated with the therapy by investigators at UCL.
Study co-author Katherine High, MD, and fellow researchers at the
Children’s Hospital of Philadelphia, are monitoring the study for any
immune reactions.
High’s laboratory has been conducting gene therapy clinical trials
for hemophilia for more than a decade. “I think it’s incredibly exciting, and
I say that even though these people are my competitors,” said High.
According to Edward G.D. Tuddenham, MB, BS, MD, director
of the Hemophilia Center at the Royal Free Hospital in London, 20
additional patients will receive the therapy to help determine the
optimal dose of the AAV. The aim is to deliver the highest possible
dose while circumventing an unwanted immune response. “We are
pretty close to the sweet spot,” explained Tuddenham. “If all goes
well, a genetic treatment for hemophilia B could be available for
widespread use in a couple of years.”
The study, “Adenovirus-Associated Virus Vector–Mediated
Gene Transfer in Hemophilia B,” was published online on December
10, 2011, by The New England Journal of Medicine.
Source: The New York Times, December 10, 2011
NHF News: Gran Avance de
Investigación en Terapia Génica para
la Hemofilia B
estos virus porque los pacientes tienen poca o ninguna inmunidad
contra ellos. Más aún, los AAV a menudo tienen como objetivo los
hepatocitos, los cuales fabrican el factor IX. Una posible desventaja
es la viabilidad a largo plazo ya que los hepatocitos no viven de forma
indefinida y se regeneran lentamente, lo que puede afectar la duración
de la terapia.
Un equipo del Hospital de Investigación Infantil St. Jude en
Menfis, TN, preparó los AAV para este estudio. Los investigadores en
UCL reclutaron los pacientes y los trataron con la terapia. La coautora
del estudio, la Dra. Katherine High y sus compañeros investigadores en
el Hospital Pediátrico de Filadelfia están dando seguimiento al estudio
en búsqueda de cualquier reacción inmunitaria.
El laboratorio de la Dra. High ha llevado a cabo ensayos clínicos
de terapia génica para la hemofilia por más de una década. “Creo que
esto es increíblemente emocionante, y esto lo digo aun cuando estas
personas son mis competidores”, expresó la Dra. High.
Según el Dr. Edward G.D. Tuddenham, MB, BS, director del
Centro para la Hemofilia en el Royal Free Hospital en Londres, otros 20
pacientes recibirán la terapia para ayudar a determinar la dosis óptima
del AAV. El objetivo es administrar la dosis más alta posible al mismo
tiempo que se evita una respuesta inmunitaria no deseada. “Estamos
bastante cerca del punto ideal”, explicó Tuddenham. “Si todo sale
bien, en un par de años podríamos disponer de un tratamiento genético
para la hemofilia B para uso generalizado”.
El estudio, “Adenovirus-Associated Virus Vector–Mediated Gene
Transfer in Hemophilia B”, fue publicado en línea el 10 de diciembre de
2011, por The New England Journal of Medicine.
Fuente: The New York Times, 10 de diciembre de 2011
Investigadores en el Reino Unido y los EE. UU. han hecho un gran
avance en la terapia génica para la hemofilia. En un estudio publicado
recientemente, el equipo informó haber tratado de manera exitosa a
seis pacientes con hemofilia B grave. El autor principal del estudio fue
Amit C. Nathwani, MB, ChB, PhD, del Departamento de Hematología,
del University College London (UCL) Cancer Institute, en Londres.
Los investigadores de UCL utilizaron virus adenoasociados (AAV,
por sus siglas en inglés) como vehículos transportadores, o vectores,
para llevar los códigos genéticos que desencadenan la producción
de la proteína del factor IX. Los pacientes con hemofilia B tienen
deficiencia del factor IX. En el mejor de los casos, los AAV llevan el
material genético dentro de las células vivas para mantener el efecto
terapéutico sin producir enfermedad ni desencadenar respuestas
inmunitarias importantes.
Nathwani y su equipo informaron que una sola inyección de
la terapia génica activó la producción de pequeñas cantidades de
factor IX; lo suficiente para permitir que cuatro de los seis pacientes
suspendieran el tratamiento con concentrados de factor IX. Los otros
dos pacientes continuaron el tratamiento con los productos del factor
pero necesitaron infusiones con menos frecuencia. Los pacientes han
seguido produciendo su propio factor IX por hasta 22 meses.
Durante la última década, uno de los principales objetivos de los
investigadores ha sido crear AAV óptimos. Con frecuencia se prefieren
8
FALL 2011 • LIFELINE
22nd Annual Swing for the Kids Golf Tournament Sponsors
Other Sponsors and
Donations
Actor’s Playhouse at the Miracle
Theatre
Alf’s Golf Shop
All Star Auctions
All Star Auto Body
Anacapri on Ponce
B.R. Cohn Winery
Biltmore Hotel
Books & Books
Bradford Renaissance
Portraiture
Brio Tuscan Grille
Broken Sound Club
Café Bustelo
Carrabba’s
Casa Larios
Cefalo’s International
Chili’s
Ciro’s Italian Restaurant
Cuba Libre Restaurant & Rum Bar
Deering Bay Yacht & Country Club
Dolphin Plus
Epic Hotel
Flamingo Resort – Costa Rica
Fleming’s Prime Steakhouse & Wine Bar
Florida Panthers Foundation
Fresh Market
Golfsmith
Goodyear Airship Operations
Hairpeople Haircuts
Hole in the Wall Pub
Intercontinental Miami
Jaguar Hospitality Group
Joanna’s Marketplace
The Joint Bar & Grill
Joseph’s Salon
Kings Bay Athletics
Kitanim Floral Design
Krissals Restaurant
Lago Mar Country Club
Longhorn Steakhouse
Lucini Italia Company
LVS Salon Group South Miami
Marlins Community Foundation
Mayfair Hotel & Spa
Miami Dolphin’s Foundation
Miami Seaquarium
Noella Rose Jewelry Design
House
Ocean Properties, Ltd.
Olive Garden
Ortanique on the Mile
Outback Steakhouse
Peach Valley Café
PF Chang’s
PGA Golf Club
Continued from page 6
Pinch a Penny
Planet Beach Spa
Vito Pisani
Planet Golf
PRP Wine International
Red Lobster
Romanza Italian Restaurant
Scully’s Tavern
Seasons 52 Fresh Grill
Seito Sushi
Shula’s Grill 347
Sonesta Hotel Coconut Grove
Splitsville
Total Wine & More
TPC Tampa Bay
Trattoria Luna
Tuto’s Pizza
Turfworx
Vilar Cigars
Edwin Watts Golf
W Hotel Hoboken
Hole in One Sponsor
Williamson Automotive Group
A Very Special Thank You
Golf Committee
Myriam Lagomasino, Co-Chair
Alex Perez, Co-Chair
Sasha Perez, Co-Chair
Debbi Adamkin
Sheila Brooks
Jan Espinosa
Lori Fabry
Yamida Garcia
Nikki Murray
Denise Schacher
Jeanine Schmidt
Linda Thomas
Amy Williams
Additional Voluneers
Sandra Bazain
Ken Crandall
Maria Feldman (Photographer)
Cathy Harber
Lance Helsel
David Lau
Lisa Leventhal
Barbara Matias
Melissa Marinelli Izquierdo
Leslie Oygar
Doris Perlman
Robin Potter
Laura Robbins (Photographer)
Robyn Salk
Claudia Van Essen
Scott Wise
LIFELINE • FALL 2011
9
FHA ResourceCenter
MISSION STATEMENT
The Florida Hemophilia Association, Inc (FHA) is a Not-for-Profit organization that is
dedicated to enhancing the quality of life in the bleeding disorders community by creating
programs and services that provide education, emotional support and advocacy. We are
contributing toward research to ultimately find a cure.
Hemophilia Clinics
All Children’s Outpatient
Care Clinic
Pediatric Cancer and
Blood Disorders Center
601 5th Street South,
Third Floor
St. Petersburg, FL 33701
Phone: (727) 767-4931
www.allkids.org
Center for Children’s
Cancer and Blood
Disorders at Arnold
Palmer Hospital
for Children
92 West Miller St., MP 318
Orlando, FL 32806
Phone: (321) 841-8588
www.orlandohealth.com
Joe DiMaggio
Children’s Hospital
Pediatric Specialty Center
1150 N. 35th Ave.
Suite 520
Hollywood, FL 33021
Phone: (954) 986-2234
Lee Memorial Hospital
Department of Pediatric
Hematology & Oncology
9981 So. Healthpark Dr.
Suite 156
Ft. Myers, FL 33908
Phone: (239) 332-1111
Nemours Children’s
Clinic, Jacksonville
Department of Pediatric
Hematology/Oncology
807 Children’s Way
Jacksonville, FL 32207
Phone: (904) 697-3789
(904) 697-3600
www.nemours.com
University of Florida
Department of Medicine
Adult Hemophilia
P.O. Box 100277
Gainesville, FL 32610
Phone: (352) 265-0725
University of Florida
Pediatric Hematology/
Oncology
P.O. Box 100296
Gainesville, FL 32610
Phone: (352) 273-9120
www.peds.ufl.edu/
divisions/hemonc/
Nemours Children’s
Clinic, Orlando
Department of Pediatric
Hematology/Oncology
83 West Colombia St.
Orlando, FL 32806
Phone: (407) 650-7230
Sacred Heart Pediatric
Hemophilia Program,
Pensacola
Phone: (850) 416-7712
St. Joseph’s Children’s
Hospital
Pediatric Hematology
Oncology Out-patient
Clinic
3001 W. Dr. Martin
Luther King Jr. Blvd.
Tampa, FL 33607
Phone: (813) 554-8294
or (813) 321-6820
The University of Miami
Hemophilia Treatment
Center
Pediatric Clinic Location
ACCW-5A
1611 NW 12th Avenue
Miami, FL 33136
Phone: (305) 585-5635
Adult Clinic Location
ACCW-3A
1611 NW 12th Avenue
Miami, FL 33136
Phone: (305) 243-6925
www.htcextras.org
USF Adult Hemophilia
Center
Department of Internal
Medicine
12901 Bruce B. Downs
Boulevard, MDC 19
Tampa, FL 33612
Phone: (813) 974-1325
Do the 5
1 Get an annual comprehensive check-up at a hemophilia treatment
center. 2 Get vaccinated – Hepatitis A and B are preventable.
3 Treat bleeds early and adequately. 4 Exercise to protect your
joints. 5 Get tested regularly for blood-borne infections
10
FALL 2011 • LIFELINE
CONTACT NUMBERS
Florida Hemophilia
Association Office
(888) 880-8330
Vice President
Barbie Arrebola
Executive Director
Debbi Adamkin
(305) 235-0717
[email protected]
National Hemophilia
Foundation Office (800) 424-2634
Hemophilia
Federation Office
(800) 230-9797
LA Kelley
Communications, Inc.
Free resource material on
Hemophilia
(800) 249-7977
About This Publication
LifeLine is the official
Newsletter of the Florida
Hemophilia Association.
It is produced quarterly and
distributed free of charge to
requesting members of the
bleeding disorder community.
Florida Hemophilia
Association Headquarters
18001 Old Cutler Road, Suite 309
Palmetto Bay, FL 33157
Toll Free: (888) 880-8330
www.floridahemophilia.org
Newsletter Committee:
Debbi Adamkin, Maria Rubin,
Denise Schacher, Linda Thomas,
and Amy Williams
Design and Production:
McShane Communications, Inc.
www.mcshanecom.com
LIFELINE • FALL 2011
11
FIRST CLASS PRST.
U.S. POSTAGE PAID
TAMPA, FL
PERMIT NO. 540
Florida Hemophilia Association
(Formerly known as Florida Chapter, NHF)
18001 Old Cutler Road, Suite 309
Palmetto Bay, FL 33157
MAKE A DIFFERENCE…VOLUNTEER!
VOLUNTEERING
is a reciprocal relationship.
VOLUNTEERING
connects us as people
and builds communities.
VOLUNTEERING
is a path to discovery and a
catalyst for social action.
Be part of a great community!
BECOME A VOLUNTEER!
To volunteer, please visit floridahemophilia.org/volunteer or call (888) 880-8330.