1. health and fitness
2. disorders

The Official Newsletter of the Florida Hemophilia Association
FALL 2014
INSIDE
Executively Speaking
Page 2
Community Corner
Page 6 - 8
NHF News
Page 16
FHA Resource Center
Page 19
“SAVE THE DATE”
Advocacy Training Dinner
January 14
Educational Program
Fort Lauderdale
February 8
NHF Washington Days
February 25-27
O
HFA Symposium - St. Louis
March 26-28
5th Annual Walk in the Jungle
May 2
n Monday, November 17, 2014, the Florida Hemophilia Association (FHA)
hosted its 25th Annual Swing for the Kids Golf Tournament at Lago Mar Country
Club in Plantation. After a rainy and overcast morning, the sun came out and it was a
beautiful day for golf ! At the start of the day, golfers checked in and ate lunch,
generously donated by Corporate Caterers, in the clubhouse. Then it was off to the
driving range where golf pro Perry Parker conducted a free video swing analysis and
mini golf clinic. After a welcome and announcements from Executive Director Debbi
Adamkin, the golfers hit the course for the afternoon. There were a number of
contests that the golfers could participate in during the day. On Hole #14, for a small
donation golfers got the chance to challenge golf pro Perry Parker in “Beat the Pro”.
The contest raised an additional $660 for the tournament. Thank you to Perry and the
CSL Behring team for putting the contest together!
Continue...
ExecutivelySpeaking
MensajeEjecutivo
It’s been incredibly busy for us here at FHA and
with the year winding down, I want to take a
minute to thank all of our supporters, volunteers
and donors that were instrumental in helping us
achieve our goals and for providing their
assistance to make our programs, events and
various outings a success. With that said, we’ve already got a head
start on 2015 as we have several new things up our sleeve. Please
stay connected by checking out the website and our Facebook page
for up-to-date information.
Este año ha sido increíblemente movido para nosotros aquí en la FHA y
como ya va a finalizarse, quiero tomar un momento para agradecerles a
todos nuestros partidarios, voluntarios y donantes que fueron
instrumentales para ayudarnos a alcanzar nuestros objetivos y por
proporcionar su asistencia y hacer que nuestros programas, eventos y
diversas salidas fueran un éxito. Dicho esto, ya tenemos una ventaja en
2015 ya que tenemos varias cosas nuevas planeadas. Por favor,
manténganse informados de nuestra página web y nuestra página de
Facebook para obtener la información mas actualizada.
One of our main focuses in 2014 was the launch of the Bleeding
Disorder Coalition of Florida (BDCF). The coalition hosted its first
State Advocacy Day on March 20, 2014 at our State Capitol, which
proved to be very successful with over 20 scheduled visits with
Florida legislators and staff. BDCF and its volunteers will continue to
develop an important dialogue with the key Florida decision makers.
If you have a passion for advocacy and are interested in getting
involved, please contact us at [email protected]
Finally, we are always looking for volunteers to serve on the following
committees: 5th Annual Walk in the Jungle and the 32nd Annual
Family Education Symposium. If you are interested or have some
ideas that you’d like to share, please contact me directly at
[email protected]
I look forward to seeing you in 2015!
Debbi Adamkin
FHA Executive Director
En el 2014 el enfoque principal fue el lanzamiento de la Coalición de
Enfermedades Sanguíneas de la Florida (Bleeding Disorder Coalition of
Florida, BDCF). La coalición organizó su primera Día de Abogacía Estatal el
20 de marzo de 2014 en nuestro Capitolio de la Florida el cual resultó ser
un gran éxito con más de 20 citas con los legisladores y el personal de la
Florida. BDCF y sus voluntarios continuarán desarrollando un diálogo
importante con personas claves al hacer decisiones en la Florida. Si usted
es apasionado por la abogacía y está interesado en participar, por favor
póngase en contacto con nosotros en [email protected]
Por último, siempre estamos buscando voluntarios para servir en los
siguientes comité: 5ta Caminata Anual en la Selva y el Simposio 32 Anual
de Educación Familiar. Si usted está interesado o tiene algunas ideas que
le gustaría compartir, por favor póngase en contacto conmigo
directamente en [email protected]
Espero verlos en el 2015!
Debbi Adamkin
Directora Ejecutiva de FHA
In Memory of ...
Maylen De La Fuente
2
FALL 2014 • LIFELINE
In November, we unfortunately lost a member of our
“family”. Maylen de la Fuente was an active member
of the Florida bleeding disorders community. She was
especially involved in the Walk in the Jungle, when she
and her beloved husband Johnny lead Team Matrix to
raising over $7,000 in the past two years. Maylen and
her beautiful smile will be missed.
Congratulations
to all the winners!
1st PLACE
Left to right:
Jim Sherratt, Joe D'Amico, Greg Rapplean, Gerry Rapplean
2nd PLACE and Crystal Cup Sponsor
Left to right:
Ron Hoffman, Greg Thomas, Ricky Thomas, Marty Martinez
(Continued...)
Following an exciting round of
golf, everyone gathered in the clubhouse
for the dinner program, where
University of Miami and Florida
Panthers announcer Jay Rokeach served
as the emcee and auctioneer for the
evening. During dinner, everyone watched a
presentation and video that showed the daily life
of a person with hemophilia. A special thank you goes out to the families
who contributed photos and videos to the presentation. It was a
wonderful way to show why we do what we do at FHA.
Thank you to everyone who helped to make this year’s golf
tournament another success! Special thanks to our golf committee and all
the volunteers who helped us on the day of the tournament. It truly takes
a team to put on an event of
this caliber and it wouldn’t
have happened without
your commitment and
dedication. Finally, we’d
like to thank our
participants and our
sponsors for their generous
donations. FHA is so
grateful for all that you do
to support our
organization!
3rd PLACE
Left to right:
Pablo Mejia, Joey Robinson, Robert Fernandez, Chuck Mercer
Continue...
FALL 2014 • LIFELINE
3
(Continued...)
THANK YOU
SPONSORS!
TITLE SPONSOR
Baxter International Inc.
MAJOR SPONSORS
Bayer Healthcare Pharmaceuticals
CSL Behring
Corporate Sponsors
Novo Nordisk
Octapharma
Pfizer
Crystal Cup Sponsor
Emergent BioSolutions
Walgreen’s Infusion Services
The Wingmen Foundation
Par Sponsor
Community Bank of Broward
Zuni Transportation
Hole Sponsors
Alma Foundation
Biogen Idec
BioRx
Grifols
Masters Title, Inc.
Morgan-Weiss LLC
The Cesta Family
The Ziccardi Family
Hole In One Sponsor
Massey Yardley
Lunch Sponsor
Corporate Caterers
In-Kind Sponsors
Costco
Lago Mar Country Club
Perry Ellis International
Embroidery Sponsor
Levy Advertising
4
FALL 2014 • LIFELINE
Auction/Raffle Sponsors and Other Donations
Alf’s Golf Shop
Best Buy
Boomers
Bradford Portraits
Cantina Laredo
Cheesecake Factory
Dr. Tory R. Lindh
Dolphins Plus
Downtown Bicycles
Edwin Watts
Flamingo Beach Resort & Spa
Florida Panthers
Funky Buddha Brewery
Gallery One Fort Lauderdale
GG’s Waterfront Bar and Grill
Golf Galaxy
Home Depot
Humberto Capelo
Hyatt Regency Jacksonville
International Links Miami
Italio Kitchen
J. Alexander’s
Jaguar Hospitality Group
Jay and Joan Eichel
Johanna E. La Rosa
Kerry’s By The Sea
Latif’s Jewelry
Lifestream Wellness Spa
Lilac and Lilies
Maggiano’s Little Italy
Mama Mia Italian Ristorante
Marriott Boca Raton
Marriott Harbor Beach Resort &
Spa
Miami Seaquarium
Mr. M’s Subs
Novecento
Oceans 234
Ocean Properties Ltd.
Olive Garden
P.F. Chang’s
Padrino’s Cuban Cuisine
Phllyis Lazarow Salon
Plantation Preserve Golf Course
Presidente Supermarket
Ramada Downtown Hollywood
Red Bull
Red Door Spa
Renaissance Tampa International
Plaza
ROK:BRGR
Specialty Restaurants Corporation
Tel Aviv Texaco
The Club at Emerald Hills
The Fresh Market
The Tower Club
Trattoria Romana
Tropical Sailing Catamaran
Charters
Truluck’s Fort Lauderdale
Umberto’s Pizzeria
Thank You To Our Golf Committee
Volunteers
Debbi Adamkin — Event Chair
Jon Salk — Committee Chair
Barbie Arrebola, Valerie Barnhart,
Jesus Benitez-Soto, Mary Bosco,
Jeanette Cesta, Ken Crandall, Jan Espinosa,
Robin Potter, Lily Gomez, Myriam Lagomasino,
Ginny Leibick, Lisa Leventhal, Ivan Sada,
Justin Lindhorst, Barbara Matias, Laura Robbins,
Heather Stewart, Jeanine Schmidt,
Linda Thomas
Elise Boston, Sheila Brooks, Chad
Brown, Yamida Garcia, Lily Gomez,
Jim Harrison, Justin Lindhorst,
Kathy Naughton, Chris Ricci
Thank you
to everyone who helped to make
this year’s golf tournament
another success
!
Guy’s DAY OUT
O
n Sunday, November 16,
men, dads and their sons
gathered at Lago Mar Country
Club for an awesome
afternoon! After introductions,
the guys went out to the
driving range and putting
green for some a mini golf
clinic and some friendly
competition. When they came
back to the clubhouse, the guys
broke out into groups for rap
sessions. Thank you to Perry
Parker, Jeff Salantai and Ivan
Sada for facilitating the
program and CSL Behring for
sponsoring the program.
6
FALL 2014 • LIFELINE
Women’s
RETREAT
O
n Saturday, November 8, we hosted a program for Women with Bleeding Disorders at the Sheraton Ft Lauderdale. The featured
speaker was Dr. Diane Dimon of Matters of the Mind. Immediately after the introductions and an icebreaker, Diane had the
group of ladies grab a beach towel and then escorted them all out to the beach where they all gathered in a circle. While basking in the
beautiful Florida sunshine, they all participated in Diane’s very interactive presentation “Sharing and Exploring the Power of
Gratitude”. Afterwards the ladies went back inside and had a delicious brunch while listening to the second half of Diane’s presentation
“Mediation for Anxiety and Stress Reduction”. Everyone took away something from her talks and maybe even learned some relaxation
exercises to deal with everyday stress.
Special Thanks to Diane for providing the incredible presentations and CSL Behring for sponsoring the program.
FALL 2014 • LIFELINE
7
JUNIOR NATIONAL
CHAMPIONSHIP
Submitted by
Edward
Submitted by Aron, Age 9
to play
I would first like to say thank you for picking me
met
I
cool.
was
it
g
golfin
the
golf at JNC. I really liked
I hope I can go
someone there that played with Tiger Woods.
again next year.
It's really neat that we have this opportunity.
First of all, thank
you for choosing me
to represent the Florida Hemophilia Association in Phoe
nix.
I had a great time just to let you know! I learned a lot
about playing golf from the best Perry Parker, and now
I love
it. Of course, I made some friends. At first I was kind
of shy
because I didn’t know who everybody was. Then, I starte
d to
talk to them and wasn’t that shy anymore because I
was
getting to know them. My best NEW friend was Percy
. He
was so much fun! We always played in the game room
and I
have got to say, he does excellent at playing golf. He
was
one of the best golfers that I've ever seen. I also had
another
friend, Omar. I have known him for 3 years now! I have
seen
him at other activities like the Symposium. Also, the
volunteers were excellent with helping us get better.
Janell
Badami was my caddy on Saturday and she was great
.
P.S I ABSOLUTEY LOVE GOLF! IT’S THE MOST EXCIT
ING
SPORT EVER.
Thank you!
e
t
a
D
e
h
Save t
Lace Up Your Sneakers for the
5th ANNUAL WALK IN THE JUNGLE
Saturday, May 2, 2015
Jungle Island
It’s time to start thinking about forming your team
and some creative ways to fundraise for the Walk!
The 2015 website will be up and running shortly!
8
FALL 2014 • LIFELINE
My NHF Annual Meeting Experience
By: Sara Workman
I
n September I had the fortunate experience of attending the National
Hemophilia Foundation’s (NHF) Annual Meeting in Washington D.C.
As the chair of the Bleeding Disorder Coalition of Florida, I am not
only passionate about learning effective ways to advocate on behalf of the
community, but also about meeting others in the community and hearing
about their struggles and successes. Attending an annual meeting allows not
only adult patients and caregivers to learn and make connections, but also
provides a way for children - whether they have a bleeding disorder or have
a family member affected by a bleeding disorder - to learn and make
connections with others their age in the community.
Development for Hemophilia A, Hemophilia B, von Willebrand Disease,
and other heritable bleeding disorders such as other factor deficiencies
(including I, V, VII, X, XI), and platelet disorders that I was able to attend.
The focus of this meeting was to get input on symptoms and other impacts
of life with a bleeding disorder, as well as patient perspectives on current
and future therapies to treat these disorders. There were several brave men
and women that sat on two panels to address the FDA about their lives and
their hopes for the future, and I am honored to have been able to watch
and listen to them educate government officials on what having a bleeding
disorder really means.
The annual meeting is three days long and offers multiple sessions to attend.
It is such a wonderful opportunity for patients and families to learn how to
effectively advocate for themselves and for their community. Whether you
choose to attend a session on how to communicate with your healthcare
providers, participate in one of their multiple roundtable discussions, or
learn how to address your insurance claims and the importance of advocacy,
you are sure to leave the meeting feeling empowered and educated. With
each session, you are made aware of the tools available to ensure that you
and your family are able to deal with the multiple challenges that living with
a bleeding disorder - some of which we aren’t always aware of.
If you haven’t had the chance to attend an NHF Annual Meeting, I would
encourage you to consider attending. NHF offers scholarships for first-time
attendees and announced that they are increasing the amount of total
scholarships to $100,000/year, allowing more families to attend. I would
encourage you to get your applications in early if you are interested in
applying, as many families are hoping to go. Please check the NHF website
for more information and details regarding deadlines for submission.
In addition to the annual meeting this year, the Food and Drug
Administration (FDA) held a public meeting on Patient-Focused Drug
If you are interested in becoming involved with the Bleeding Disorder
Coalition of Florida, please contact Debbi Adamkin at
[email protected] or 305.235.0717.
We are excited to announce that we are once again
accepting applications for the
Daniel L. Carlin Memorial Scholarship!
SCHOLARSHIP FUNDS
FHA will be awarding a total of three (3) $1,000
scholarships for the 2015-2016 academic year.
Two (2) of these scholarships are designated for
people who are diagnosed with a bleeding disorder.
One (1) of these scholarships is designated for a
parent of a child diagnosed with a bleeding disorder.
Awards will be dispersed directly to the institution.
For more information, please contact Debbi at
[email protected]
for the application packet.
Feast in the Park aka Holiday Duo
S U N D AY, N O V E M B E R 2 3 AT M A R K H A M PA R K
THANK YOU
SPONSORS!
12
FALL 2014 • LIFELINE
NHF News • FALL 2014
Gene Therapy Study Still Succeeding
Three Years Later
I
t has now been three years since a group of patients with severe
hemophilia B, or factor IX (FIX) deficiency, in London received a single
dose of gene therapy as part of a new clinical trial. Early results of the trial
were positive as these patients began to generate FIX levels ranging from
1%-6%. Prior to the study, they produced little to none of the crucial
clotting factor protein.
The gene therapy trial employed an adeno-associated virus serotype 8
(AAV8), a small virus that does not cause disease and produces mild
immune responses, as a vector (delivery vehicles) to introduce a functioning
FIX gene into the liver cells of subjects with severe hemophilia B. The goal
of the trial was to trigger viable, long-term FIX protein production
through a single administration of the therapy.
This seemingly modest boost in FIX “expression” is important. The increase
in FIX essentially transforms a patient symptomatically, from severe to mild,
with the end result a significant, even dramatic, reduction in bleeds. Results
described in a new article indicate that the initial breakthrough results have
been sustained during the three years since the study began in 2011.
Overall, 10 subjects with severe hemophilia B participated in the study, six
of whom received high doses of AAV8 and reached average FIX levels of
5.1%. According to investigators, this “resulted in a reduction of more
than 90% in both bleeding episodes and the use of prophylactic factor IX
concentrate.” Also, no toxic effects were reported.
The report, “Long-Term Safety and Efficacy of Factor IX Gene Therapy in
Hemophilia B,” was published in the November 20, 2014, issue of The New
England Journal of Medicine. The lead author of the update was Andrew
Davidoff, MD, St. Jude Children’s Research Hospital in Memphis, TN.
Davidoff has collaborated for more than a decade with a strong team of
researchers, including coauthor Amit Nathwani, MD, PhD, at the University
College London. “I believe that, scientifically, this is ready for prime time,”
said Davidoff.
“I think it’s going to have a big impact. The study showed both safety and
efficacy, and the side effects were minimal,” said Timothy Nichols, MD,
who heads the Francis Owen Blood Research Laboratory at the University
of North Carolina at Chapel Hill. He was not involved in the study. “This
is a single shot of medicine given to patients who are treating themselves
two or three times a week,” he told Reuters Health over the phone.
“Suddenly, they don't have to take the medicine anymore.”
Source: Reuters, November 19, 2014
Estudio de genoterapia continúa con éxito
tres años más tarde
Y
a han pasado tres años desde que un grupo de pacientes con
hemofilia B grave, o deficiencia del factor IX (FIX), recibieron una
sola dosis de genoterapia como parte de un nuevo ensayo clínico en Londres.
Los primeros resultados del ensayo fueron positivos ya que estos pacientes
comenzaron a producir concentraciones del FIX que oscilaban entre un 1%
y un 6%. Antes del estudio, estas personas producían muy poco o nada de
este importantísimo factor de la coagulación. Este aparentemente modesto
incremento en la “expresión” del FIX es importante. El aumento en la
cantidad del FIX básicamente transforma los síntomas de un paciente de
graves a leves, y el resultado final de esto es una reducción importante, e
incluso impresionante, de las hemorragias. Los resultados que se describen
en este nuevo artículo indican que las extraordinarias respuestas iniciales se
han mantenido durante los tres años transcurridos desde que inició el
estudio en el 2011.
El informe, titulado “Long-Term Safety and Efficacy of Factor IX Gene
Therapy in Hemophilia B” (Seguridad y eficacia a largo plazo de la
genoterapia para el factor IX en la hemofilia B), se publicó en la edición del
20 de noviembre de 2014 de The New England Journal of Medicine. El
autor principal de la actualización fue el Dr. Andrew Davidoff del St. Jude
Children’s Research Hospital en Memphis, TN. El Dr. Davidoff ha
colaborado durante más de una década con un sólido equipo de
investigadores, entre los que se encuentra el coautor Dr. Amit Nathwani,
PhD, de University College London. “Creo que, a nivel científico, esto está
listo para salir a la luz”, expresó Davidoff.
El ensayo de genoterapia utilizó un virus adenoasociado de serotipo 8
(AAV8) —un pequeño virus que no produce ninguna enfermedad y
provoca respuestas inmunitarias leves— como vector (vehículo
transportador) con el fin de introducir un gen activo del FIX en los
hepatocitos de personas con hemofilia B grave. El objetivo del ensayo fue
estimular una producción viable y a largo plazo de la proteína del FIX por
medio de una sola administración de la genoterapia.
En total, en el estudio participaron 10 pacientes con hemofilia B grave, 6
de los cuales recibieron altas dosis del AAV8 y lograron concentraciones
promedio del FIX del 5.1%. Según los investigadores, esto “dio lugar a una
reducción de más del 90% tanto en los episodios hemorrágicos como en el
uso del concentrado del factor profiláctico”. Además, no se informaron
efectos adversos.
“Creo que esto va a tener un gran impacto. El estudio demostró tanto la
seguridad como la eficacia, y los efectos secundarios fueron mínimos”, dijo
el Dr. Timothy Nichols, quien dirige el Francis Owen Blood Research
Laboratory en la Universidad de Carolina del Norte en Chapel Hill. El Dr.
Nichols no estuvo involucrado en el estudio. “Esto es una sola inyección de
medicamento que se aplica a pacientes que normalmente se inyectan dos
o tres veces a la semana”, le explicó a Reuters Health por vía telefónica. “Y
de pronto, ya no tienen que seguir utilizando más el medicamento”.
Fuente: Reuters, 19 de noviembre de 2014
16
FALL 2014 • LIFELINE
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
13535 Nemours Parkway
Orlando, FL 32827
Phone: (904) 697-3789,
(904) 697-3600
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
President
Jon Salk
Executive Director
Debbi Adamkin
(305) 235-0717
[email protected]
National Hemophilia
Foundation
(800) 424-2634
Hemophilia Federation
(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
915 Middle River Drive, Suite 421
Ft. Lauderdale, FL 33304
Toll Free: (888) 880-8330
www.floridahemophilia.org
Newsletter Committee:
Debbi Adamkin, Maria Rubin,
Denise Schacher, Linda Thomas
Translation:
Roxana Ambrosini, Roxanna Delgado
Design and Production:
Group M, Advertising & Design
305-235-2538
FALL 2014 • LIFELINE
19
Florida Hemophilia Association
(Formerly known as Florida Chapter, NHF)
915 Middle River Drive, Suite 421
Ft. Lauderdale, FL 33304
If you would like to contribute to
Community Corner, please submit your stories to
Debbi at [email protected]
FHA is online!
Visit www.floridahemophilia.org
for upcoming programs, event photos and more!
www.facebook.com/FloridaHemophilia
@FLHemoAssoc
www.youtube.com/user/FloridaHemophilia