If you could make a huge difference in a few minutes, would you do it?

If you could make a huge difference in a few minutes, would you do it?

Florida Hemophilia Association
(Formerly known as Florida Chapter, NHF)
18001 Old Cutler Road, Suite 309
Palmetto Bay, FL 33157
We are asking for your help!
Just take a couple minutes and a few
clicks to help us reach our goal and
raise up to $15,000
Join the VIRTUAL Walk for Hemophilia; it’s as easy as 1-2-3!
If you could make
a huge difference
in a few minutes,
would you do it?
1. Go to www.WalkForHemophilia.com
2. Create a virual character (optional)
3. Select your chapter- “Florida Hemophilia Association”
To win, we need the most people to sign in to participate
and support FHA! Be sure to share this link with your
friends and family members. With your participation, The
Florida Hemophilia Association will come out on top!!
The Bayer Virtual Walk for Hemophilia is an effort to help raise money
and awareness for the bleeding disorders community.
The Official Newsletter of the Florida Hemophilia Association
SPRING 2012
INSIDE
A great turn-out for 2012 Hemophilia
Walk in the
Executively Speaking
Page 2
Community Corner,
2nd Annual Walk in the Jungle ,
and Washington Days
Page 2-5
8th Annual Volley for a Cure
Tennis Tournament
Page 7
NFH eNotes
…see page 3-4
Page 8-9
FHA Resource Center
Page 11
“SAVE THE DATE”
Swim with the Dolphins
July 13, Key Largo
NHF Inhibitor Summit
July 19 – 22, Miami
29th Annual Family Education
Symposium
July 27 – 29, 2012, Boca Raton
NHF Inhibitor Summit
August 2 – 5, San Diego
Swim with the Dolphins
August 10, Key Largo
NHF’s 64th Annual Meeting
November 8 – 10, Orlando
SPRING 2012 • LIFELINE
1
ExecutivelySpeaking
On April 28, 2012 we hosted our 2nd Annual Walk
at Jungle Island. What an amazing day it was!
Despite the inclement weather over 700 of the 900
that registered, walked to support bleeding disorders,
create awareness and to make a difference! This
year’s goal was $75,000, and to date, we raised over
$91,000! We could not have been successful without
the help of the team captains, volunteers, sponsors,
FHA staff and everyone who worked so diligently!
Very special thanks go out to our walk Co-Chairs
Robyn Salk and Jennifer Lopez. Robyn’s team “Carly’s
Angels” raised over $13,000 and Jennifer’s team ”Victorious Victoria” raised over
$3,000. Both captains were very creative in their fund-raising efforts that
included a Zumba challenge and bake sales! Be sure to check out the highlights
of the walk on our website www.floridahemophilia.org under “Gallery”. Be sure
to check out all upcoming programs and events while you’re there!
By now you should have received the registration forms for the 29th Annual
Family Education Symposium scheduled for July 27 – 29. If not, you can
download them off of the website as well or contact the office and we’ll be
happy to send them to you. There is still space available but it’s filling up fast.
You won’t want to miss this great event!
Last but not least, if you or a family member would like to volunteer, have a
special skill such as; fund-raising, event planner, DJ, juggler, let us know! We’re
all busy in our day to day lives, but volunteering can be rewarding, a way to give
back to your community, and also a great opportunity to meet new people!
MensajeEjecutivo
El 28 de Abril de 2012 auspiciamos nuestra 2o
Caminata Anual en "Jungle Island". ¡Qué día tan
asombroso que fue! ¡A pesar del tiempo inclemente más
de 700 de los 900 que se registraron, caminaron para
apoyar desórdenes sanguineos, crear conciencia y hacer
una diferencia! ¡La meta de este año fue de $75.000, y
hasta la fecha, recaudamos más de $91.000! ¡No
podríamos haber tenido éxito sin la ayuda de los
capitanes de equipo, voluntarios, patrocinadores,
personal de FHA y todos los que trabajaron tan
diligentemente! Unas gracias muy especiales van a
nuestras Co-presidentas de la caminata, Robyn Salk y
Jennifer Lopez. El equipo de Robyn “los Ángeles de Carly”
recaudó más de $13,000 dólares y el equipo de Jennifer
”Victoria Victoriosa” más de $ 3,000 dólares. ¡Ambas
capitanes fueron muy creativas en sus esfuerzos
organizados de recaudación de fondos que incluyeron un
desafío de Zumba y ventas de postres! ¡Asegúrese de
revisar los aspectos más destacados de la caminata en
nuestro sitio web www.floridahemophilia.org bajo
"Galería". ¡Esté seguro de ver todos los próximos
programas y eventos mientras estés allí!
I look forward to seeing you soon!
¡Espero verlos pronto!
Debbi Adamkin
FHA Executive Director
Debbi Adamkin
Directora Ejecutiva de FHA
HEMOPHILIA
WALK 2012
Who knew that you could educate over 700 students about bleeding disorders in just 6 hours? Well, I
found out on April 3, 2012 when Debbi, my mom, and I did 6 presentations for the gym classes at Polo Park
Middle School in Wellington, FL. To start off the story, my mom and I were looking for a way to raise money
for the Second Annual Walk in the Jungle and educate people about bleeding disorders, so we came up
with an idea to present to students at my school. We talked to the gym teachers, they talked to the principal,
and the date was set. Then we thought who better to help us than Debbi, the woman who knows practically
everything about public speaking and educating. So she agreed to help us out.
We really worked as a team for the day. My job was official sign holder. I held up signs with facts about bleeding disorders while my mom and
Debbi talked. My mom talked about von Willebrand Disease and Debbi talked about Hemophilia and the walk. My Dad helped with the equipment
for the video presentation and sound system. After the talk, we asked questions and gave out balloons and bracelets for prizes. We did six 50 minute long
presentations with an hour break to get lunch at a small deli next to my school. It really wasn't as bad as it may sound. I had lots of fun doing it and I'm pretty
sure my parents and Debbi did, too. I probably had the most fun because I got to skip my classes for the day!
Overall, it was a successful and fun day at my school and it was very simple. We just had to get permission and do it. The students also liked it because they
didn't have to go outside and run. You should try it at your school, too! It’s a great way to promote the walk and create awareness about bleeding disorders.
Julie Cesta
6th Grader, Polo Park Middle School
2
SPRING 2012 • LIFELINE
HEMOPHILIA
WALK 2012
…continued
by Martin Frallicciardi
T
he Hemophilia Walk is a fundraising event that raises money
to find a cure for hemophilia. Kids with Hemophilia that participate
basically create a team online asking friends and family to sponsor
them with donations. Everyone is welcome to participate with the
team and the walk. One of my favorite parts of the preparation for
the walk is making the team t-shirt for the event and participating in
the t-shirt contest. The hemophilia walk in Miami, Florida takes
place in a neat place called Jungle Island that is basically an animal
zoo surrounded by water making the event a great experience.
My first time participating in the hemophilia walk was in 2011.
I went with my Dad and sister and really did not know much of
what to expect. It turned out that I really had a good time and met
a lot of people with hemophilia sharing a common goal to help find
a cure. Also, during the event I realized how fortunate I am to have
parents that have health insurance that cover my factor VIII for my
treatments.
Through my experience in the hemophilia walk I can make a
difference by being able to make people aware of Hemophilia and
teach others about it. This is what keeps me wanting to participate
year after year and with friends and family to cheer me on!
This year I was better prepared to
organize my team “Team Martin” having
family and friends make donations and
helping me fundraise. For example, at my
school my class setup a bake sale and
everyone brought stuff to sell. Making it a
great way to raise awareness for my cause
and needed donations to reach my goal.
During the bake sale I felt blessed to have
friends that took time out of their Friday
afternoon to help me with the bake sale.
Another great idea a friend had was to make brownies from scratch
so she, my sister and her best friend could sell them at school. They
were delicious and sold out every single day!
When we went to the walk, there were many kids like me that
had Hemophilia. I didn’t feel alone! When the walk began my
friends and I walked together and laughed at all the funny animals.
At the end of the walk some other people including me got
recognized for donating a lot of money. I am so happy that the
money we raised will go to help find a cure for Hemophilia, provide
support and help for families less fortunate, and to provide
education and awareness.
Jennifer Lopez, Debbi Adamkin, Robyn Salk, and Lisa Leventhal
SPRING 2012 • LIFELINE
3
A VERY SPECIAL THANK YOU TO
OUR 2012 WALK IN THE JUNGLE
NATIONAL SPONSORS
NATIONAL PRESENTING
SPONSOR
Baxter
PACESETTER SPONSOR
Bayer Healthcare
OFFICIAL SPONSOR
Grifols • Pfizer
2nd Annual Walk in the Jungle
Congratulations
to the top 10
Fundraising Teams
SUPPORTING SPONSOR
Biogen Idec
A VERY SPECIAL THANK YOU TO
OUR 2012 WALK IN THE JUNGLE
LOCAL SPONSORS
GOLD
Pfizer • Novo Nordisk
SILVER
Baptist Health • CSL Behring
Novis Pharmaceuticals • Wells Fargo
BRONZE
CVS/Caremark • Grifols
Jackson National Life Insurance
TJX Foundation
Walgreens Specialty Infusion
SUPPORTER
Biogen Idec • Octapharma
GDZ Computer Services
KILOMETER
BioPlus Specialty Pharmacy
Markham Leventhal/Jorden Burt LLP
Palmetto Bay Village Center
IN-KIND
Dunkin Donuts • Jungle Island
Kennesaw Fresh Squeezed Juices
Mosaic Studios • NuGo Nutrition
4
SPRING 2012 • LIFELINE
1. Carly’s Angels – Robyn Salk (Captain)
$13,306.00
2. Shaun & Brandon’s Team – Leslie Clark & Alex Pensak
(Co-Captains)
$7,655.00
3. Team Alex Dones – Madelyn Dones (Captain)
$4,680.00
4. JUSTINCREDIBLES – Chris Brigman (Captain)
$4,490.25
5. Novis Pharmaceuticals – Victoria Collins (Captain)
$3,735.00
6. Team Martin – Martin Frallicciardi (Captain)
$3,469.00
7. Alley Cats – Debbi Adamkin (Captain)
$3,610.00
8. Victorious Victoria – Jennifer Lopez (Captain)
$2,665.00
9. Nicky’s Clone Troopers – Jan Espinosa
(Captain)
$2,650.00
10. Matthew’s Army – Myra Novak
(Captain)
$2,250.00
Winner of the Best T-shirt Contest
“J Walkers” – Amy Hook (Captain)
Washington Days
2012
Pictures from L-R: Maria Rubin, Liliana Gomez, NHF CEO-Val Bias, Linda Thomas, Debbi Adamkin, Lily Bervis
I
attended Washington Days this year, it was held on
March 8th. Once again, a large group of people affected
by bleeding disorders from all over the country got together
to advocate for issues affecting our community. This year
a united group of Floridians walked the halls of Congress
and had meetings with our Representatives and Senators
(or their staffers) and told our stories about how The
Affordable Care Act (ACA) has impacted our families’
access to healthcare and how we want Congress to support
it. Also, we asked for continued funding of hemophilia
treatment centers, as they are proven to be the best place
where individuals with bleeding disorders receive
comprehensive treatment. Another request was for
support of specific legislation affecting the bleeding
disorder community.
Please consider attending Washington Days in the
future, experience is not necessary. Usually, you arrive to a
training session on Wednesday where the different issues
are explained and discussed. You are encouraged to share
your own personal story, bring pictures, copies of your
insurance EOB (Explanation of Benefits), anything that
will make an impact on the person listening to you. The
appointments will be made for you and you will usually be
paired with other people from your state for a full day of
visits on Capitol Hill.
It is empowering to advocate for issues that directly
affect our community! Try it!
by Maria Rubin
A
sistí Días en Washington este año, se llevó a cabo el 8 de
Marzo. Una vez más, un gran grupo de personas afectadas por
trastornos de la coagulación de todas partes del país se reunieron
para abogar por temas que afectan a nuestra comunidad. Este
año un grupo unido de la Florida caminaba por los pasillos del
Congreso y se reunió con los diputados y senadores (o sus
asistentes) y contó sus historias acerca de cómo La Ley de
Asistencia Asequible (ACA) ha afectado el acceso de nuestras
familias a la atención medica y la forma en que quieren que el
Congreso apoye esta ley. Asimismo, pedimos por la
continuación del financiamiento de los centros de tratamiento
de la hemofilia, ya que han demostrado ser el mejor lugar donde
los individuos con trastornos de la coagulación reciben el
tratamiento medico. Otro pedido fue para el apoyo de una
legislación específica que afecta a la comunidad de trastorno de
la coagulación.
Por favor, considere asistir Dias en Washington en el futuro,
experiencia no es necesaria. Por lo general, se llega a una sesión
de entrenamiento el Miércoles donde los diferentes temas se
explican y discuten. Le animamos a que comparta su historia
personal, traer fotos, copias de su EOB de seguro (Explicación
de Beneficios), cualquier cosa que pueda hacer un impacto a la
persona que lo escucha. Las citas se harán para usted y por lo
general se combina con
otras personas de su estado
para un día completo de
visitas en el Capitolio.
Te da poder el
defender las cuestiones
que afectan directamente
a nuestra comunidad!
¡Pruébelo!
SPRING 2012 • LIFELINE
5
8th Annual Volley for a Cure
Tennis Tournament
O
ur annual tennis tournament was held
on Wednesday, May 2nd at the Coral Oaks
Tennis Club. Players of all levels ranging from
2.5 - 4.0 were able to play with a partner of
their choice or allow FHA to match them up
with a partner. The participants all enjoyed
some fun and competitive tennis while
benefiting a very worthy cause. Afterwards
everyone enjoyed a fabulous lunch of wraps,
tossed salad, chips, fresh fruit and assorted
desserts that were generously donated by
Whole Foods Market. For the second year in a
row we celebrated the birthday of one of our
loyal players, Doris Perlman. We had some
awesome raffle prizes and silent auction items
and a lot of very happy recipients.
A very special thank you goes out to the
chairs of the event, Lori Fabry and Lisa
Leventhal as well as to Amy Williams, FHA
executive assistant. They were all instrumental
in the success of the tournament.
We are so grateful to the Coral Oaks Tennis
Club for their generosity and support of our
annual tennis tournament by donating their
beautiful courts and clubhouse for the last
seven years. Hats off to Ralph Martins of GT
Sports for his support by coordinating the
round robin format and for donating the
winner’s prizes and tennis balls year after year.
enjoyed some
“ All
fun and competitive
tennis while
benefiting a very
worthy cause.
Special Thanks to our sponsors
CORPORATE SPONSORS
Baxter
Bayer
Pfizer
TOURNAMENT SPONSORS
Coral Oaks Tennis Club
GT Sports
FOOD AND BEVERAGE SPONSOR
Whole Foods Market - Pinecrest
AUCTION & RAFFLE SPONSORS
Coral Oaks Tennis Club
Dave & Mary Alper JCC
Fairchild Tropical Gardens
Holiday Inn Highland Beach
Jeanne Bashein Design
Jungle Island
Marce Salon
Miami City Ballet
Miller Sports Training & Fitness
Sir Galloway Cleaners
Sony Ericsson Open
Tennis Advantage of Miami
Texas de Brazil Churrascaria
Valeria Designs Jewelry
Vizcaya Museum & Gardens
Whole Foods
SPRING 2012 • LIFELINE
7
“
NHF eNotes • June 2012
Government Studies’ Data To Determine Possible
Reversal of MSM Blood Donation Ban
T
he US government has three studies underway and a
fourth in the planning stage, the results of which will yield
hard evidence to help determine if a continued ban on blood
donations for gay men is still warranted. Since 1977, blood donations from men who have had sex with another man (MSM) have
been indefinitely deferred because of the greater prevalence of
transmissible viruses such as HIV/AIDS and hepatitis B in these
groups.
During a recent meeting of the Blood Products Advisory
Committee of the U.S. Food and Drug Administration, James
Berger, acting director Advisory Committee on Blood Safety and
Availability at the US Department of Health and Human
Services (HHS) framed the crux of the issue by asking: “Can
blood safety be maintained or improved under a revised blooddonation screening criteria that would permit donations by
lower-risk MSM [men who have sex with men] donors?” He
added that HHS “is committed to continuous improvement in
the safety of the nation’s blood supply.” Once research is concluded, explained Berger, “There will be a transparent and evidence-based evaluation of MSM donation policies.”
With the advent of enhanced blood screening and the potential stigmatization associated with the ban, gay rights advocacy
groups have been supporting a change in the policy. The fourth
study now being planned “really has the potential to be a game
changer,” said Nathan Schaefer, director of public policy at the
Gay Men’s Health Crisis (GMHC) in New York. He explained
that such a study could establish criteria so that “a low-risk sub-
set of gay and bisexual men” could be eligible donors.
There are great disparities in MSM blood-donor policies
from country to country. While some nations allow MSM to
donate if they have not had gay sex within a certain time frame,
GMHC does not favor such an abstinence-based policy because
it excludes gay men in committed relationships. A better policy,
explained Schaefer, would be similar to those of Spain or Italy,
in which all potential donors are asked how many sex partners
they have had in the past six months. Anyone, gay or straight,
who states that they have had only one partner can donate
blood, while others are deferred for a given time period. That
would ensure, said Schaefer, that “high-risk heterosexuals” are
also deferred.
The National Hemophilia Foundation, the Hemophilia
Federation of America and the Committee of Ten Thousand
have argued that any change to current policy should be based
on science. Further, they state that there is not enough evidence
to suggest that a change would not increase risk and any change
in policy must err on the side of caution. However, NHF CEO
Val Bias has said he was “encouraged” by the efforts to get fresh
research to evaluate changes to the current MSM policy. He
added that NHF will “continue to work with all interested parties” to make sure that revisions “put safety first and are made
on the basis of scientific evidence.”
It is estimated that it will take at least two years before
enough evidence is collected to support a change in blood donation policy.
Datos de estudios gubernamentales condicionarían
una posible revocación de la prohibición para la
donación de sangre por parte de los MSM
L
l gobierno estadounidense tiene actualmente en marcha
tres estudios y un cuarto en etapa de planificación,
cuyos resultados arrojarán datos contundentes que ayuden a
determinar si todavía se justifica una prohibición constante en las
donaciones de sangre por parte de hombres homosexuales.
Desde 1977, se han aplazado de manera indefinida las donaciones de sangre por parte de varones que han mantenido relaciones homosexuales (MSM, por su sigla en inglés) debido a una
mayor prevalencia de virus transmisibles, tales como el VIH y el
8
SPRING 2012 • LIFELINE
virus de la hepatitis B, en estos grupos.
Durante un reciente encuentro del Comité Asesor para
Productos Sanguíneos (Blood Products Advisory Committee) de
la Administración de Fármacos y Alimentos de los EE. UU.,
James Berger, director interino del Comité Asesor para la
Seguridad y la Disponibilidad de Sangre en el Departamento de
Salud y Servicios Humanos (HHS) de los EE. UU. enfocó el
quid del asunto al preguntar: “¿Puede mantenerse o mejorarse
la seguridad de la sangre bajo unos criterios modificados de
≥…continua Estudios Gubernamentales
NHF eNotes • June 2012
selección para la donación de sangre que permitirían las donaciones por parte de donantes MSM [varones con relaciones
homosexuales] de bajo riesgo?” Agregó que el HHS “está comprometido con la continua mejora en la seguridad del abastecimiento de sangre del país”. Una vez se concluyan las investigaciones, explicó Berger, “Se realizará una evaluación transparente y fundamentada en datos científicos de las políticas relacionadas con las donaciones por parte de los MSM”.
Con la aparición de análisis de sangre mejorados y la posible
estigmatización asociada a la prohibición, grupos de protección
de los derechos de los homosexuales han estado apoyando un
cambio en la política. El cuarto estudio que actualmente se está
planificando “de hecho tiene el potencial de cambiar las reglas
del juego”, expresó Nathan Schaefer, director de políticas públicas de la organización Gay Men’s Health Crisis (GMHC) en
Nueva York. Explicó que un estudio de este tipo podría establecer los criterios para que “un subconjunto de hombres homosexuales y bisexuales de bajo riesgo” pudieran ser donantes idóneos.
Existen grandes discrepancias de un país a otro en las políticas sobre donación de sangre por parte de MSM. Mientras que
algunos países permiten que los MSM puedan donar si no han
mantenido relaciones homosexuales durante un período específico de tiempo, GMHC no está a favor de tal política basada en
la abstinencia ya que excluye a aquellos hombres homosexuales
que están en relaciones de pareja estables. Una política mejor,
explicó Schaefer, sería similar a las existentes en España o Italia,
he
t
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i
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Swimlphins!
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u
J
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en donde se les pregunta a todos los posibles donantes cuántas
parejas sexuales han tenido en los últimos seis meses. Cualquier
persona, homosexual o heterosexual, que diga que ha tenido una
sola pareja puede donar sangre, mientras que se aplaza por un
período de tiempo dado la donación de los demás. Con esto se
asegura que también se aplace a los “heterosexuales de alto riesgo”, dijo Schaefer.
La Fundación Nacional para la Hemofilia (National
Hemophilia Foundation, NHF), la Federación Estadounidense
para la Hemofilia (Hemophilia Federation of America) y el
Comité de los Diez Mil (Committee of Ten Thousand) han argumentado que cualquier cambio en la política actual debe basarse
en datos científicos. Más aún, estas organizaciones indican que
no existen suficientes pruebas que permitan suponer que un cambio no aumentaría el riesgo, y cualquier cambio en la política
debe pecar por exceso de precaución. Sin embargo, el director
ejecutivo de la NHF Val Bias ha dicho que considera “alentadores” los esfuerzos para obtener investigaciones actuales con el
fin de evaluar cambios a la política actual sobre los MSM.
Agregó que la NHF “continuará trabajando con todas las partes
interesadas” para asegurar que las modificaciones “pongan en
primer lugar la seguridad y se hagan sobre la base de pruebas
científicas”.
Se calcula que tomará por lo menos dos años antes de que se
recojan datos suficientes para respaldar un cambio en la política
de donación de sangre.
For More information
and to reserve a spot
contact us at
(888)880-8330 or
[email protected]
2nd Quarter In Memory
of Donor Recognition:
CONCHITA O. COMPAIN ZABALA
Mujica-Matias Family
JOHN BRIGMAN
Brigman Family
John & Lydia Bacon
Joan Bozsoki
Betty Brigman
David Brigman
Georgia Justice
James Purcell
Walter & Mary Taylor
Larry Teal
Gerald & Gwen Ward
SPRING 2012 • LIFELINE
9
FHA ResourceCenter
MISSION STATEMENT
CONTACT NUMBERS
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
Alex’s Place at Sylvester
1475 NW 12th Avenue
Suite C103
Miami, FL 33136
Phone: (305) 689-7210
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
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
(978) 352-7657
ABOUT THIS PUBLICATION
LIFE LINE 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:
Group M, Advertising & Design
305-235-2538
SPRING 2012 • LIFELINE
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