2012 LIFELINE mech - Florida Hemophilia Association

The Official Newsletter of the Florida Hemophilia Association
WINTER 2012
Register Today to Walk in The Jungle!
INSIDE
It’s Easy!
Executively Speaking
Page 2
How to Register for
2nd Annual Walk in The Jungle
Page 3
Community Corner,
15th Annual Holiday Duo
Page 4
FDA Approves HIV Vaccine
for Human Trial
Page 5
Donor Sponsors to FHA
Page 6-7
Investigators Publish Two
Studies Using UDC Data
Page 8-9
JOIN US FOR OUR
2ND ANNUAL WALK IN THE JUNGLE
Saturday, April 28th at 7:30am
Jungle Island
1111 Parrot Jungle Trail Miami, FL
Distance: 2K/4K (1.2/2.4 miles)
FHA Resource Center
Page 11
“SAVE THE DATE”
HFA Annual Meeting
March 30 – 31
How can you make a difference?
Help raise funds.
Help raise awareness.
Walk with us.
Every Step Makes a Difference!
2nd Annual Walk in the Jungle
April 28
8th Annual Volley for a Cure
May 2
Womens vWD Retreat
June 8-9
See page 3 for
registration
instructions.
29th Annual Family Education
Symposium
July 27 – 29
WINTER 2012 • LIFELINE
1
ExecutivelySpeaking
The 2nd Annual Walk in the Jungle
will take place on April 28, 2012. That’s
just 6 weeks away! This is one of our
biggest fund-raisers of the year and we
need your support and participation to
reach this year’s goal of $75,000! This is
a great event for the whole family that
will not only help create more
awareness of bleeding disorders to the
community, but will raise money for
programs and services for FHA. On February 18, we created some
WALK excitement by having the walk kick-off “happy hour” at the
Martini Bar at Gulfstream Park. Over 60 people attended to show
support to FHA and to learn how they could participate in the 2012
walk. Don’t fret if you’ve missed the meeting. We will walk you
through the process!
Please go to www.floridahemophilia.org for news
and upcoming events.
MensajeEjecutivo
La Segunda Caminata Inaugural de Hemofilia del 2012, se
realizará el 28 de Abril del 2012. Necesitamos que todos acudan
y participen en la caminata. Este es un gran evento para toda la
familia, no solamente ayudará a crear más conciencia de los
trastornos hemorrágicos en la comunidad, sino que recaudará
fondos para los programas y servicios de la FHA.
El 18 de Febrero creamos cierto entusiasmo por la
Caminata, con una “happy hour” en el Martini Bar en
Gulfstream Park. Más de sesenta personas asistieron a la
reunión para mostrar su apoyo a la FHA y para enterarse de
cómo pueden participar en la caminata del 2012. No se
preocupe si no pudo asistir a la reunión. ¡Le ayudaremos a
caminar a través de todo el proceso!
Visita el sitio web ww.floridahemophilia.org
donde se publicarán los próximos eventos.
See you at the Jungle!
Nos veremos en la Jungla!
Debbi Adamkin
FHA Executive Director
Debbi Adamkin
Directora Ejecutiva de FHA
29th Annual
Family Education Symposium
July 27 – 29
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HIGHLIGHT SESSIONS
Pulse on the Road – Laurie Kelley
Dental Session – Dr. Jack Thomas
Clinical Trials and What’s up the Pipeline– Dr. Glenn Pierce
Special Keynote Speaker – Sherrill Diller
Prophylaxis 2012 – Dr. Joanna Davis
Kids, teen and youth programs
Rap sessions – Men’s Women’s, Teens, and Spanish
2
WINTER 2012 • LIFELINE
How to Register
Como Registrar
2nd Annual Walk in the Jungle
Saturday, April 28, 2012
at Jungle Island
2nd caminata annual en la selva
Sabado, Abril 28, 2012
en Jungle Island
Support Hemophilia and Bleeding Disorders
by Walking on the 28th!
Apoye a la comunidad de Hemofilia y
desordenes sanguíneos caminando el 28!
Register Today online for the Walk!
It’s Easy!
Regístrese hoy para la caminata!!!
Es muy sencillo!
1. Log on to www.hemophilia.org/walk
2. Click on: “Florida Walk” Tab.
1. Connectese a www.hemophilia.org/walk
2. Aprete en: “Florida Walk”.
If you are a New Walker:
1. Click on: REGISTER and create a
New Account
Si usted es un nuevo participante:
1. Apreté en: REGISTRO y establezca una
nueva cuenta
Returning Walkers:
1. Enter your Username and Password
(from 2011) and click Login.
(If you forgot your username/password,
follow the New Walker instructions)
Para participantes anteriores
1. Entre su nombre de usuario y palabra
de seguridad (del 2011) y apreté Login
(si se le olvido el nombre /palabra de
seguridad, siga las instrucciones del
Nuevo participante)
Next: To Complete the Process
1. Then click either: Register as an
“Individual”, “Join a Team”
OR “Create a Team”.
2. And follow the instructions.
3. Fill in your information and start
fundraising!!!!
Siguiente paso: Completar el proceso
1. Apreté la tecla apropiado: regístrese
como “individuo”, “únase a un equipo”
O “establezca un equipo”
2. Y siga las instrucciones
3. Complete su información y comience a
recolectar fondos
Personal Page and Team Page
You can customize your Personal and Team
Fundraising Page with photos, messages,
personal stories and much more!
Pagina personal y pagina del equipo
Usted puede personalizar su página y la
del equipo con fotos, mensajes, historias
personales y mucho más!!!
Every Step Makes A
Difference!
Cada paso hace una
diferencia!
For Questions contact the Florida
Hemophilia Association at 305-235-0717
or [email protected]
Para preguntas llame a
Florida Hemophilia Association al
305-235-0717 o [email protected]
www.facebook.com/floridahemophilia
www.facebook.com/floridahemophilia
WINTER 2012 • LIFELINE
3
15th Annual Holiday Duo
O
n Sunday, December 11th, the Florida Hemophilia
Association hosted its 15th Annual Holiday Duo Family
Picnic at CB Smith Park. We had a
great turnout! The families enjoyed a
marvelous barbecue lunch catered by
Picnic King. The children enjoyed
snow cones and cotton candy as well
as a hula hoop contest. It was great to
have DJ Tony back spinning his tunes
this year.
Making a return appearance again
this year, was the Hialeah Firefighters
Benevolent Association, (HFBA) and Santa Claus. Hats off to
HFBA for the festive holiday decorations and pictures with
Santa for each of our children and for arranging for Santa and
his firefighter elves to come out and spread some holiday cheer
to our families and kids.
We had some fabulous raffle prizes and each child went
home with a gift from Santa. Thank you to all of our sponsors
for making this event possible. Also, a round of applause to all
of the volunteers who helped with getting raffle prizes, and set
up the day of the event. You’re the best!
We look forward to seeing all of you next year at the
Holiday Duo Family Picnic.
A very special
“Thank You” to our
Sponsors
Thanks
Accredo
Baxter
Bayer Healthcare
Curascript
CVS Caremark
Octapharma
Walgreens Infusion
Services
4
WINTER 2012 • LIFELINE
NHF eNotes • January 2012
FDA Approves HIV Vaccine
for Human Trial
A
n HIV vaccine developed by researchers from the University
of Western Ontario (UWO) was recently approved by the
U.S. Food and Drug Administration (FDA) for clinical trials in
humans.
A team led by Chil-Yong Kang, PhD, a researcher and
professor at UWO’s Schulich School of Medicine & Dentistry,
created the unique vaccine, known as SAV001, by using a killed
whole HIV-1 similar to the killed whole virus vaccines for
hepatitis A and influenza. The virus is genetically engineered so
that it does not cause disease and can be generated in large
volumes. SAV001 is being developed with the support of
Sumagen Canada Inc., a subsidiary of Sumagen Co., Ltd., a
Korea-based pharmaceutical company specializing in HIV
vaccines.
The SAV001 vaccine still needs to pass through the following
three phases of human clinical trials before it becomes
commercially available:
Phase I, which begins this month, double checks the safety
of the vaccine in 40 HIV-positive volunteers.
Phase II will measure immune responses in approximately
600 HIV-negative volunteers who are in the high-risk category
for HIV infection.
Phase III will measure the efficacy of the vaccine in
approximately 6,000 HIV-negative volunteers in the high-risk
category for HIV infection.
“FDA approval for human clinical trials is an extremely
significant milestone for our vaccine, which has the potential to
save the lives of millions of people around the world by
preventing HIV infection,” said Kang.
Source: The University of Western Ontario press release dated December 20, 2011
La FDA aprueba vacuna contra el
VIH para ensayos en seres humanos
L
a Administración de Fármacos y Alimentos (FDA) de los EE.
UU. aprobó recientemente una vacuna contra el VIH
desarrollada por investigadores de The University of Western Ontario
(UWO; Universidad de Ontario Occidental) para ensayos
clínicos en seres humanos.
Un equipo liderado por Chil-Yong Kang, PhD, investigador y
profesor de la Facultad de Medicina y Odontología Schulich de
la UWO, creó esta excepcional vacuna, conocida como SAV001,
utilizando VIH-1 entero inactivado similar a las vacunas con
virus entero inactivado para la hepatitis A y la gripe. El virus es
genomanipulado de forma tal que no causa la enfermedad y
puede producirse en grandes cantidades. El SAV001 se desarrolla
con el apoyo de Sumagen Canada Inc., una filial de Sumagen
Co., Ltd., una compañía farmacéutica con base en Corea que se
especializa en vacunas contra el VIH.
Antes de que esté disponible comercialmente, la vacuna
SAV001 todavía debe ser sometida a las siguientes tres fases de
ensayos clínicos en seres humanos:
Fase 1: comienza este mes y busca comprobar la seguridad
de la vacuna en 40 voluntarios infectados por el VIH.
Fase 2: determinará las respuestas inmunitarias en
aproximadamente 600 voluntarios no infectados por el VIH y
que se encuentran en la categoría de alto riesgo para la
infección por VIH.
Fase 3: determinará la eficacia de la vacuna en
aproximadamente 6,000 voluntarios no infectados por el VIH y
que se encuentran en la categoría de alto riesgo para la
infección por VIH.
“La aprobación de la FDA para los ensayos clínicos en seres
humanos es un logro sumamente importante para nuestra
vacuna, la cual tiene el potencial de salvar las vidas de millones
de personas alrededor del mundo al prevenir la infección por el
VIH”, expresó Kang.
Fuente: Comunicado de prensa de The University of Western Ontario, fechado
20 de diciembre de 2011
WINTER 2012 • LIFELINE
5
Our Thanks to You
FHA gratefully acknowledges our donors who have so generously contributed to us in 2011
$50,000 and over
Baxter
$25,000 - $49,999
Bayer Healthcare
$15,000 - $24,999
Pfizer
$10,000 - $14,999
CSL Behring
Novo Nordisk
Octapharma
Walgreens Infusion Services
$5,000 - $9,999
Accredo Health
Biogen, Idec
BioRX
Curascript
CVS Caremark
Grifols, USA
$1,000 - $4,999
Baptist Health South Florida
Coram Hemophilia Services
Florida Christian School
GDZ Computer Services
Arapahoe Nation - Todd Goberville
Hemophilia Alliance
Kedrion USA
Novis Pharmaceuticals
Palmetto Bay Village Center
Talecris
TJX Foundation
Wells Fargo Bank
$100 - $999
4 Girls Foundation
A-1 Tri State Construction
Corporation
Acker Morris PA
Kristin Adit
All Star Auto Body
Nick Altreche
Judy, Esther & Esther Alvarez
Ivon & Ivonne Alvarez
Carlos Alvarez
Allison & Ivan Alvarez
Judith Alvarez
Sandy Arioli
AXA Foundation
Jorge Azor
Baxter International Foundation
Wanda Bedell
Nicole Beit-Halachmy
Bennett/Cahill Contractors, Inc.
Stephen Berenzweig
Sally Berenzweig
Margaret Berndt
Charles Berndt
Javi & Aida Betancourt
Laura & Carlos Betancourt
Robert Betts
Wendy Blaugrund Brown
Rochelle Blum & Martin Claire
Eileen & Bob Breakstone
Deena Brito
David Burgeson
6
WINTER 2012 • LIFELINE
Armando Burgos
Melissa Cano
Tina Capello & Famly
Donna & Olivia Cardet
Bob & Beth Carlin
Mercedes Carlson
Molly Carranza
Lisa Cartwright
Guido Castro
Frank & Val Cerutti
Timothy & Leslie Clark
Compuquip Technologies
Victor Cruz
Renay Cummings
Cyber-Fox Trading, Inc.
de Mari Dental Practice
The Deason Family
Jessica del Alcazar
Michael DeLorenzo
Federico Diago
Dinorah Diaz
Don Durando
Bill & Cece Dykas
Jay Eichel
Carolina Escobio
John & Jan Espinosa & Family
John G. Espinosa Financial Group
Claudine Faifer
Raul Fernandez
Gilda & Orlando Fernandez
Jim & Nuala Finn
Sharella Flowers
Tony Frallicciardi
Luis Freitas
Juan (Joselito) Fuentes
Randy Furby
Jeffrey & Pamela Gale
Oswaldo, Joaquin &
Adrian Ganoza
Jaime Garcia, M.D.
Yamida Garcia
Hector Garcia-Ortiz
Robert Gilman
Hugo Gomez
Jason Green
Stephen & Robin Greene
Anthony & Melissa GrosskopfMocega
Karen Hamorsky
Baby Hansraj
Hialeah Firefighters Benevolent
Association
Hirschorn Foundation
George Hitt
Holt Lee Construction, Inc.
Wallace Huertas
Jessica Hughes
Lilian Izaguirre
Jackson National Life Insurance
Company
Raj Jagnanan
Kahn Carlin & Company
Tony & Cathy Kalamas
S.R. Kanisetty, MD
Barry Kates
Linda Keller
Howie & Liz Kleinberg
Jerome Kornbluth & Emily Aronson
Dana Kuhn
Dave Lau
Billy Lazarus
Learn Aid of Puerto Rico
Arthur & Dary Lewis
Lifeline Pharmaceuticals
Larry Madeirous Memorial
David Maingot
Karen Loney
Marty Malaga
Wayne Martucci
Maria F. Matiz
Mattcon GC
Rhonda & Don McNiel
Rona Miller
Jonathan Miller
Fairy Mills
Carol & Hal Milstein
David Milstein
Don & Gail Mitzner
Andrew & Peyton Mobayed
Milly & Jesus Morales
Elizabeth Mountcastle
Paul Muncey
John Musumeci
Jill Nisson
Harry Nonsanchuk
Linda Norris
Ocean Chiropractic
Jonathan Ohebshalom
Pete Oldbury
Rafael Arnaldo Olivieri
Peter O’Malley
John Parler
Joe Pavlock
Charlie Paxton
Alex & Sasha Perez
Ileana Perez
Fernando Perez-Coira
Tom Phillips
Phillips & Richard PA
Vito Pisani
Pizza Mastro
Carlos Plaud
The Prudential Foundation
Alfredo Ravinet
Familia Reyna-Rivera
Chris Ricci
Eagan Rifas
Adrian & Daniel Rivera
Carlos Rivera
Elisa Robbin
Stephen & Laura Robbins
Anita Robrish
Janyra & Gadiel Rosario
Charles Rousseau
Jamie Rubin
Juan Camilo Ruiz
Jennife Ruth
Robyn & Jon Salk
Eileen & Ira Salk
Russell & Jennifer Salk
Sanchez Family
Michael Schlesinger
Wendy & Carl Schreck
Marite Schwarz
Familia Schwarz Iglesias
Lori Seidler (Abrams)
Robin Seskin
Sheldon Siegel
Syma Silverman
Mark Simon
Carol & Steven Smith
Staci Solomon
Southern Wine & Spirits
Mark Srour
Vickie Strange
John Swarthout
Richard Swoiskin
Steve & Devi Tejiram
The Ethical Factor
Rick & Linda Thomas
Marilyn Tolley
Travel Ventures of America
Sandi & Ed Tucker
United Way of Dade County
Elizabeth & Steven Vainder
Willie Vega
Emanuel Velazquez
Herb & Donna Weber
Heather Weinbrum
Jeffrey Weiss
Scott Wise
Mary & BrettWood
Yoshino Trieschmann
Design Group
Jill Youngswick
Herbert & Susan Zarkin
Tanya Zuckerbrot
$25 - $99
Claire Abbatiello
Tausha Abney
Ana Acevedo
Elsie Acevedo
The Acker Family
Camille Adalumo
Debbi Adamkin
Corey Adamkin
David & Carol Adamkin
Craig Adler
Advanced Mortgage Planners
Phoolmatie Aldana
Lynn Alexander
Patricia Alvarez
Ruben Alvarez
Ivette Alvarez
Jessica Alvarez
Agnes Amore
Barney & Barbara Amos
Chris Anderson
Monike Archilla
Luz Stella Aricape
Beatriz Armand
Alicia Armenteros
Michael Asmar
Jill Aspden
Peachie Attonito
Carolina Ayuso
Daisy Baca
Vicky Barba
Yvonne Bare
Chris Barley
Paula Barzaga
Jacqueline Barzaga
Mia Mari Barzaga-Perez
Daniel Bass
Sandra Bazain
Gregory & Dawn Marie Bedusa
Shari Bender
Susan Benjoseph
Tamar & Yoni Benjoseph
Jose Luis Bereicua
Pauline Berman
Lilliam Bervis
Ingrid Besserer
Gladys Betancourt
Nikki Betts
Chetram Bipath
Vidal Blanco Family
Wanda Blanco Mendez
Julie Bliemel
Laurie Bloch
Burt & Jackie Bloom
Seth & Barbara Blum
Robert Boas
Frances Bonagura
Veronica Borges
Javier Borrero
Jamie Braman
Patrice Bravo
Phyllis Bressler
Marisete Bretone
Anne Brogan
Diane Brooks
Sheila Brooks
Jon Brooks -Pocomoke Tribe
Ray Broughton
Alan & Elaine Brown
Doug & Julie Brown
Chad Brown
Valerie Bruein
Tom Burke
Bernard Bushell
Sonia Caicedo
Paul Callihan
Karell Campbell
Mindy Campbell
Josephine Camps - Paredes
Guillermo Cancio-Bello
Lynne Capretto
Eustaquia Carbonell
Michael Carden
John & Carmen Carden
Beatriz Cardona
Irene Carley
Stephanie Cartagena
Lenore Cartier-Carlton
Ada Carvajal
Linda Case
Cynthia & Jeff Caspi
Reina Castaneda
Marge Cesta
Debbie Champion
Robert Chang
Debbie Chitwood
Jennifer Chopping
Ruthie Coakley
Diane Coleman
Allen Coleman
Justin Colon
Lara Colton
David Confessore
Megan Connolly
Cyndy Coors
Sandra Cornett
Linda & Richard Costa
Cesar Couri
Sue Cowell
Ada Cruz
Francisco Cruz
Debbie Culpepper
Aimee Davis
Gabriela de Cespedes-Lopez
Marisabel de Jesus
Dianne de la Cruz
Andrew De La Fuente
Dawn De oro
Gloria Del Solar
Ruth & Len Denbin
Dale Denio
Lisa G. Dever
Lily Diaz
The DiChiara Family
Louis DiCriscio
Anthony DiDomenico
James Dillon
Doreen Discavage
Madelyn Dones
Jorge Dones
Angel J. Dones
Angel M. Dones
Stacy & Daniel Dorb
Christa Betterly Dram
Linda Dube
…continued “Donors List”
Eduardo DuBouchet
Tim Duncan
Rhonda Durante
Arthur Durazo
Andrea Dyal
Kathleen Dyce
Liselle Easto
Laura Ebbage
Bonnie Eifert
Stuart & Rona Eisen
Jordan Elbaum
Todd Ellenberg
Karine Enderle
Maurice Esperanza
Patricia Espinosa Thompson
Gus Espinosa
Linda Exposito
Eye Spy Media Technologies
Liz Fabry
Lori Fabry
Roni Faerman
Karen Fahy Ahrend
Adriana Faria
Martha Fay
Paula Fay
Joy & Izzy Feingold
DJ Feldman
Jeffrey Feldman
Howard Feldman
Sam Fensterstock
Leslie Ferrara
Krista Flood Ridgard
Sharella Flowers
B. Rachelle Fowler
Bob Fox
Bernadette Fox
Charles Fox
Cathy Fox
Julian Friedman
Cecy & Eddie Frometa
Adam Fulghum
Scott Furr
Future Data Vision
Bianca Gabay
Nikolas Garcia
America Y. Garcia Ojeda
Luis Garcia-Chacon
Antonio Gelbstein
Gerald Glassman
Louise Gleason
Doug Gluck & Sandy Siegel
Melanie Goessele
Marilyn Goldberg
Sandra Gomez
Liliana Gomez
Carmen Gonzales
Margarita Gonzalez
Grace Gonzalez
Marizay Gonzalez-Poggi
Lourdes Goodman
Kathleen Goodman
Jim & Hilary Gottlieb
Adam Gould
Norbert Graber
Fred Green
Jane Greenberg
Michael Greenland
Bill Griffis
Joe Gulino
GVF, Inc.
Patrick Hackshaw
Diana Hall
Russell Hamilton
Jodi Hammer
Don Han
Hartly Personnel
Johanna Heer
Lizie Heilbron
Rommel Hernandez
Raul Hernandez
Marta & Lourdes Herrero
Ginny Hill
Rhonda Hines
Ilene Hirsch
Nancy Hoffman
Melissa Holloway
Hometown Dry Cleaners
Debra Hood
John Hoover
Matt & Kim Hughes
Mary Idsardi
Harry Irizarny
Jill Jacobs
Wadie Jagnanan
Sham Jagnanan
Devindra Jagnanan
Brandon Jeanneret
Betzaida Jimenez
Al Gerone Johnson
William & Mary Johnston
Terri Jordan
Jonathan Jordan
Cathlin Kagan
Johnanthony & Kallianna Kalamas
Amy Kaufman
Paula & Jerry Kaye
Carol Keller
Elizabeth Kerwin
Bruce & Barbara Kessler
Jaime & Zachary Keyes
Juan Kipperman
Ruth Kipperman
Mireya Klein
Shari Kline
Beth Kokol
Bonita Kormos
John Krissel
James Krist
Soulange Kruger
Shauna Krupnick
Kathy & Gary Kunz
Susan Labello
Myriam Lagomasino
Olga Lagomasino
Bruce Lamchick
Roxanne H. Lancella
Dawn LeBlanc
Arlene Lee
Pedro Legrand
Edward Lehmann
Sherri Leiser
Daniel Leventry
David Levin
Jeffrey Levin
Donna Levine
Jeff Levy
Liliana’s Custom Drapes
Wendi Lipsich
Diana Lista
Michelle Longsworth
Jennifer Lopez
Victor Lopez
Diana Lopez
Bev Lopez
Kim Lopez
Dr. Marisol Lopez-Belio, DDS
Wayne Loring
Diana Louzado
Nancy & Ed Lowey
Haydee Lugo
Diana Lutke
The Macy Family
Ann Mancini
Ira Mandell
Manhattan Mortgage Company
Amanda Manos
EJ & Steve Manton
Khemraj Maraj
Lawrence Marin
Alex Marin
Marta Marin
Nora Marin
Howard Marks
Elizabeth Marques
Lori Martin
Saylin Martinez
Emilio Mascaro II
Annabelle Matias
Maria McDonald
Cassie McGovern
Alison McKee
Gabriela McKernan
Enid Medina
Sona & Italo Medina
The Melgaard Family
Angie P. Mena
Claudia Mena
Birgitta & Joe Mendola
Elsa Mendoza
The Mercado Family
Vanessa Mesones
John & Roxanne Mestre
Lourdes Metcalfe
Brenda Meyer
Jen, Brad & Adam Milstein
Nancy Minton
Patricia Moghari
Momentum Marketing
Ana Montenegro
Michael Morabito
Yamile Morabito
Richard D. Morales, DMD, PA
Colby Moran
Rosemary Mossinger
Barbara Mujica Matias
Ivan Muratti
Maureen & Marty Murphy
Al Nakis Realtor
Alex Naranjo
Nydia Navas
Dana Pearl Negri
Becky Neller McQueen
David & Emily Netburn
Cathy Newman
Kavita Niranjan
Vanessa Noriega
Carlos Nunez
Karen Oddone
Jennifer & Ryan O’Kuhn
Elyssa Olgin
The Olivares Family
Diana Oliveira
Irene & William Olmeda
Jose Ortega
Erick Ortega
Carolina Ortiz
Valerie Ortiz
Mirta Otero
Familia Pachano
Rosario Pacheco
Deena Padnis
Betty Pankau
Barbara Panzer
Paragon Hemophilia Solution
Ana Pardo
The Parris Family
The Peguero Family
Hilda & George Percy
Melissa Perera
Bruce & Penni Perez
Edward L. Perez
Ivonne Perez
Doris Perlman
Beckey Persaud
Karen Pery
Fina Phillips
Steve Phillips
Javier Pierluisi
Miriam Pimentel
Nicole Pimentel
Ronnee Pinder
Deborah Pines
Raul & Patricia Pino Fullana
Joseph Pitre
Vanessa & Jimmy Pla
Barbara Poliacoff
Seymour Polishook
Lisa Pollard
Dina Popper
Cheryl Porter
Kenn Powell
Rohit Prakash
Damian Pratt
Premier Dental Care
Jose Prieto
Jamie Pross
Cleopatra Puerto
Vivianne Quinones
Elizabeth Quinones
Jose & Cristy Quinones
Darcie Quinonez
Rebecca & Carlos Raciti
Paul Raitano
Laura & Andrew Reiss
Jennifer Resnick
Sally Ricci
Rice Psychology Group
Laura Ries
Diane Rincon
Elaine & Jeffrey Rivera
David Roberts
Alise Robinson
Cristina Rodriguez
Alexander Rodriguez
Jacqueline Rodriguez
Yaidelin Rodriguez
Robert Rodriguez
Tim Rohloff
Angel & Louise Rojas
James Roof
Carolyn Rosa
Arlene Rosado
Yolanda Rosado
Charles Rosenbalm
Craig Rosenthal
Melinda Rosenthal
Dawn Rotellini
Susan Rothenberg
Michelle & Greg Roventini
Leslie Roy
Kari Ruben
Estelle Rubin
Maria & Rachelle Rubin
David Rucker
Anthony Russello
Liliana Sabin
Rivolane Sacks
Matthew Safarik
Kenny Salk
Mac Salmon
Miriam Sanchez
Maribel Sanchez
Aida Sanchez-Gomez
Sarah & Mike Sandler
Bejai Sanichara
Renee Sansaricq
Noelle Sansaricq
Maria E. Santaella
Anibal Sanz
Michelle Sarason
Billie Scarboro
Denise Schacher
Stuart Scherline & Alan Pate
Jeanine Schmidt
Alan & Margie Schnall
Megan Schoner
Jeff Schorr
Jeff, Lisa (Landis) and
Jordan Schulz
Antoinette Schwartz
Raul Schwarz
Ana I. Schwarz
Laura Schwarz
Manju Seerman
Eric Seiden
Jessica Seiden
Gail Seidman
Heidi Sell
Freddie Semidey
Lorraine Shapir
Hamala Sharma
Taijpaul Sharma
Hope Shasha
John & Maggie Shaw
Rowland J. Shaw
Harriet Shea
Laura Shechter
Bill Sheehan
Wendy Shell
Clayton Shillingford
Melissa Shore
Francine Silver
Michelle Silverman
Barbara Simon
Melanie Simon
Ram Singh
Dana Smithline
Rosario Solares
Marisel Sordo
Jack & Phyllis Spear
Heather Spencer
Czarina Spieler
Jennifer Spielman
Loren Spotts
Gail Stanko
Elena Stele
Barbara Stern
Arline Stern
Deb Stern Pratt
Suzanne Stewart
Paul, Traci, Kapri &
Anakka Stickley
Sheryl Stiefel
Paulette Strauss
Laura Strehle
Robert Stringer
Sabine Strobel
Suffolk Wellness Center
Savitre Sukhlall
Sunny Marine Enterprises
Susan Swindle
Amanda & Sean Tanzer
Jessica Telchin
Louis Testa
Julie Thornton
David Tignor
Elena & Johana Quinones Torres
Charlene Touby
Monica Tremblay
Carl Trenz
Pedro Triana
Francisco & Elvira Trucco
Tami Trujillo
Ellen Turko
Linnette Umana
Trina Unzicker
Maryellen Upton
Al & Rosa Valdez
Frank Vann
Leonidas Velarde
Myriam Vizcaino
Loreana von Plocki
Tammy Wagner
Claudia Wagner
Patricia (Trish) Walsh
Megan Weil
Gail Weinbrum
Gloria Weisbrod
David Weisenberg
Savannah Weiss
Debbie Wexler-Hazan
Marcy Betts White
Jim White
Marla Wilderman
Stuart Wolk
Wonderfultouch Massage
Therapy
Patricia Wood
CJ Worden
Jamie Xenakis
Priscilla Yordan
Renee Young
Belinda & David Zeitouni
Mark Zeitouni
Lori Ziegler
Sharon Zitrin
Jen Zuckerberg
Howard Zwang
WINTER 2012 • LIFELINE
7
NHF Newsletter Story • February 2012
Investigators Publish Two Studies
Using UDC Data
A
pair of studies in the December 2011 edition of the
American Journal of Preventive Medicine highlighted some
notable findings from data collected by the Centers for Disease
Control and Prevention (CDC).
In the first study, “Insurance, Home Therapy, and
Prophylaxis in U.S. Youth with Severe Hemophilia,” the authors
reviewed data from the CDC’s Universal Data Collection (UDC)
project, a voluntary surveillance system that relies on patient
enrollment.
The lead author of the study was Judith R. Baker, MHSA
Department of Pediatric Hematology/Oncology, University of
California Los Angeles.
Included in the study was a nationwide cohort of 3,380 boys
and young men with severe hemophilia A or B, ages 2-20 years
old, all of whom had received care at a federally funded
hemophilia treatment center (HTC) between January 1, 2008,
and December 31, 2010.
The results showed that 90% of patients used home therapy
and 78% were on a prophylaxis treatment regimen. Only 2%
were uninsured. Investigators found that those with health
insurance were much more likely to be on prophylaxis (77%) vs.
those who were uninsured (21%). The data also showed
significant correlations between race, age, inhibitor status, and
HTC use, home therapy use and prophylaxis.
“Youth with severe hemophilia who annually obtain care
within the U.S. HTC network had a high level of health
insurance, home therapy, and prophylaxis. Exploration of
factors associated with insurance coverage and yearly HTC
utilization, and interventions to optimize home infusion and
prophylaxis among youth of African-American and ‘other’
race/ethnic backgrounds are warranted,” concluded Baker and
her colleagues.
Investigators also drew on UDC data for the second study,
“Physical Functioning in Boys with Hemophilia in the U.S.”
The lead author was Paul E. Monahan, MD, Department of
Pediatrics, Hematology/Oncology, University of North
Carolina at Chapel Hill.
Researchers reviewed 15 potential predictors of poor physical
functioning in boys with hemophilia A and B (up to 18 years of age)
who had received care at an HTC between 1998 and 2008.
They found that several characteristics were associated with
limitations of joint function, including increasing age, presence
of joint bleeding and inhibitors. African-Americans were also
independently associated with activity restrictions. In addition,
obesity and medical coverage with Medicaid, as opposed to
private health insurance, were independently associated with
multiple poor outcomes.
“Interventions focused on eliminating inhibitors, improving
outcomes for African-American children with hemophilia, and
maintaining healthy body weight are warranted. In addition,
strategies are needed to assure adequate insurance coverage for
all people with hemophilia to eliminate economic barriers to
optimal functional outcomes,” the authors concluded.
Source: Obesity, Fitness & Wellness Week, January 7, 2012
Educational Participant Grants
Now Available!
ATTENTION FIRSTTIME ANNUAL
MEETING ATTENDEES!
Educational
Participant Grants
Available for NHF’s
64th “Mapping Our
Future”
The National Hemophilia Foundation is pleased to offer
Educational Participant Grants for first-time attendees to its 64th
Annual Meeting, “Mapping Our Future” in Orlando, Florida,
November 8-10, 2012. The Annual Meeting enables our community to come together and exchange information on a wide variety of topics, from the basics of diagnosis to the most recent and
relevant developments in treatment and technology. It is the premier opportunity for networking and support for individuals and
families affected by bleeding disorders. NHF currently provide
$30,000 annually to families who wish to attend the meeting and
take advantage of the wealth of information and educational
opportunities during the annual meeting.
Application forms may be downloaded by going to
www.hemophilia.org
Application Deadline:
8
Letters must be postmarked by Friday, June 22, 2012.
WINTER 2012 • LIFELINE
For More Information Contact: [email protected].
Investigadores publican dos estudios
utilizando datos del sistema UDC
U
n par de estudios en la edición de diciembre de 2011
del American Journal of Preventive Medicine (Revista
Estadounidense de Medicina Preventiva) destacaron algunos
hallazgos notables de los datos recolectados por los Centros
para el Control y la Prevención de Enfermedades (CDC).
En el primer estudio, titulado “Seguros médicos, terapia en
el hogar y profilaxis en jóvenes estadounidenses con hemofilia
grave” (Insurance, Home Therapy, and Prophylaxis in U.S. Youth
with Severe Hemophilia),
los autores analizaron datos del
proyecto de Recolección Universal de Datos (UDC, por su sigla
en inglés) de los CDC, un sistema voluntario de vigilancia que
depende de la inscripción de pacientes.
La autora principal del estudio fue Judith R. Baker, MSHA,
del Departamento de Hematología y Oncología Pediátrica, en
la Universidad de California, Los Ángeles.
En el estudio se incluyó una cohorte a nivel nacional de 3,380
niños y hombres jóvenes con hemofilia A o B grave, de entre 2 a 20
años de edad, todos los cuales habían sido atendidos entre el 1 de
enero de 2008 y el 31 de diciembre de 2010 en un centro de
tratamiento para la hemofilia (HTC, por su sigla en inglés)
financiado con fondos federales.
Los resultados mostraron que 90% de los pacientes
recibieron terapia en el hogar y que 78% estaban en un régimen
de tratamiento profiláctico. Sólo 2% de ellos no tenían seguro.
Los investigadores encontraron que aquellos que tenían seguro
médico tenían mucha más probabilidad de estar recibiendo
profilaxis (77%) que aquellos que no tenían seguro (21%). Los
datos también mostraron correlaciones significativas entre la
raza, la edad, la presencia o no de inhibidores, y la asistencia a
los HTC, la terapia en el hogar y la profilaxis.
“Los jóvenes con hemofilia grave que obtienen atención
médica cada año dentro de las redes de HTC en los EE. UU.
tenían una alta frecuencia de seguro médico, terapia en el hogar
y profilaxis. Se justifica el análisis de factores relacionados con
la cobertura de seguro y la utilización anual de los HTC, y las
intervenciones para optimizar las infusiones en el hogar y la
profilaxis entre los jóvenes afroamericanos y otras razas o
etnias”, concluyeron Baker y sus colegas.
Los investigadores también
utilizaron los datos del UDC
para el segundo estudio,
titulado “Funcionamiento físico
en niños con hemofilia
en los EE. UU.”
(Physical Functioning
in Boys with Hemophilia
in the U.S.). El autor principal
fue el Dr. Paul E. Monahan, del
Departamento de Pediatría, Hematología y Oncología, en la
Universidad de Carolina del Norte en Chapel Hill. Los
investigadores revisaron 15 posibles factores pronósticos de
funcionamiento físico deficiente en niños con hemofilia A y B
(hasta los 18 años de edad) que recibieron atención médica en
un HTC entre el 1998 y el 2008.
Encontraron que varias características se relacionaban con
limitaciones en el funcionamiento de las articulaciones, entre
ellas una mayor edad, la presencia de hemorragias articulares y
de inhibidores. Los afroamericanos se relacionaban también de
manera independiente con restricciones en las actividades.
Además, la obesidad y la cobertura médica con Medicaid, a
diferencia de la cobertura con seguros médicos privados, se
relacionaban de manera independiente con múltiples resultados
malos.
“Se justifican las intervenciones enfocadas en eliminar los
inhibidores, mejorar los resultados en los niños afroamericanos
con hemofilia, y mantener un peso corporal saludable. Además,
se necesitan estrategias para garantizar una cobertura de seguro
adecuada para todas las personas con hemofilia, de forma que
se eliminen las barreras económicas para resultados funcionales
óptimos”, concluyeron los autores.
Fuente: Obesity, Fitness & Wellness Week, 7 de enero de 2012
WINTER 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
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
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
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
WINTER 2012 • LIFELINE
11
Florida Hemophilia Association
(Formerly known as Florida Chapter, NHF)
18001 Old Cutler Road, Suite 309
Palmetto Bay, FL 33157