2013 LIFELINE-WINTER.qxd - Florida Hemophilia Association

2013 LIFELINE-WINTER.qxd - Florida Hemophilia Association

The Official Newsletter of the Florida Hemophilia Association
3rd Annual
WINTER 2013
“Walk in the Jungle”
INSIDE
Executively Speaking
Page 2
Community Corner
New Staff Member
New Board Member
Justin’s Poem
Page 5
NFH News
Page 8
FHA Resource Center
Page 11
“SAVE THE DATE”
Volley for a Cure Tennis
Tournament
Thursday, March 7
Black and Blue Bash Walk
Fundraiser Bogart’s Bar and Grille
Saturday, April 13
Inhibitor Family Camp
April 19 – 22
For more information, visit:
www.comphealthed.com
3rd Annual Hemophilia Walk
in the Jungle
Saturday, May 4
Swim with Dolphins
Friday, June 14
Friday, July 12
Friday, August 2
30th Annual Family Education
Symposium
September 6-8
T
he 3rd Annual Hemophilia Walk in the
Jungle will take place on Saturday, May 4, 2013
at Jungle Island. So save the date! The Walk is our
largest fundraiser of the year and with attendance
nearing 1,000 people, we are spreading more
awareness about hemophilia and other bleeding
disorders than ever. Last year’s walk raised
$92,000, and this year we are setting our sights on
breaking the $100,000 mark!
To kick off the Walk season, we are going to start
with a contest. Any walker that raises $500 or more
by March 15, 2013 will be entered into a drawing to
win a $50 gift card. Don’t forget you have to register
to participate in the Walk! And if you can’t make it on
the day of the Walk, don’t fret. You can still create a
team and raise money too!
To register for the Walk:
• Go to www.hemophilia.org/walk
• Click on “FL”
• If you are a team captain, click on “Create a
Team” and fill out registration form
• If you are a walker joining a team, click on
“Join a Team” and fill out registration form
• If you are interested in walking but do not
have a team, click on “Register” and fill out
registration form
See you
in the
Jungle!
1
ExecutivelySpeaking
We’re off to a great start for 2013 with several great outings/events that we hope you’ll take part in. One
event that I’m extremely excited about is the upcoming “Walk in the Jungle”. We launched the Walk three
years ago to help raise awareness of hemophilia and bleeding disorders and to offer an activity that families
and people of all ages would enjoy partaking in. The Walk has proven to be our biggest fund-raiser that affords
us the opportunity to provide you with annual programs such as, the Family Education Symposium, Mother’s
Brunch and Dolphin Day Camp. Through events like our Walk, golf tournament and Volley for a Cure we
continue to come together as a community and educate the general public about bleeding disorders.
We would like to thank everyone who supported FHA in 2012 and made it possible for us to continue our
mission of serving the bleeding disorder community in Florida and providing programs and services throughout the course of the year.
Below is a chart that describes how funds were distributed for the 2012 programming and a list that highlights the many individuals,
corporations, and donors who supported our worthwhile cause.
Debbi Adamkin
FHA Executive Director
19%
13%
7%
4%
MensajeEjecutivo
Hemos empezado con éxito el 2013 con varios eventos en los que
esperamos puedan participar. Uno de estos eventos, y del cual estoy
sumamente emocionado, es la próxima "Caminata en la Selva”. Hace tres años
lanzamos esta caminata para ayudar a crear conciencia sobre lo que es la
hemofilia y otros trastornos de sangrado, y al mismo tiempo ofrecer una
actividad en la cual las familias y personas de toda edad disfruten participando.
La caminata ha resultado ser nuestro evento recaudador de fondos más
importante, el cual nos brinda la oportunidad de ofrecer programas anuales
como, el Simposio Familiar de Educación, Campamento de Día de Delfínes y
Brunch de las Madres. Debido a actividades como nuestra caminata, torneo de
golf y Volley para la Cura, seguimos uniéndonos como comunidad y educamos
al público en general sobre los trastornos de sangrado.
Quiero aprovechar esta oportunidad para agradecer a todos los que
apoyaron a FHA en el 2012 e hicieron posible que podamos continuar nuestra
misión de servir a la comunidad que sufre trastornos de sangrado en Florida y
así poder proporcionar programas y servicios durante el transcurso del año.
Abajo encontrarán un cuadro con la descripción de cómo fueron distribuidos
los fondos para la programación del 2012 y una lista que destaca a las personas,
corporaciones, y donantes que apoyaron nuestra valiosa causa.
Debbi Adamkin
Directora Ejecutiva de FHA
2
WINTER 2013 • LIFELINE
57%
Allocation of Funds
57% Annual Programs
19% Publications and Marketing
13% Compassionate Care and
Family Assistance
7%
Board Meetings and
Educational Conferences
4%
Membership and Dues
Thank You for Your Generosity
FHA gratefully acknowledges our donors who have so generously contributed to us in 2012
$25,000 and Over
Baxter
Bayer
Pfizer
$15,000 - $24,999
Caremark RX
$10,000 - $14,999
CSL Behring
Novo Nordisk
$5,000 - $9,999
Accredo
Biogen Idec
BioRX LLC
Coram, Inc.
Express Scripts
Grifols
The Hemophilia Alliance
Octapharma
Walgreens
$1,000 - $4,999
Allstate Foundation
Baptist Health South Florida
Florida Christian School
Hialeah Benevolent Firefighters
Association
Jackson National Life
Insurance
Thomas Maher
Markham and Lisa Leventhal
Jennifer Lopez
Novis Pharmaceuticals
TJX Foundation
Wells Fargo
Zumba Fitness
$100 - $999
Stacy Acker
Debbi Adamkin
Advanced Mortgage Planners
Ivette Alvarado-Leiderman
All Star Auto Body
AM Pool
Barney and Barbara Amos
Avionics Sales Corporation
Avnet
A.T. Williams DDS
Alex Aycart
Jim Azling
Jorge Azor
Stanley and Ilene Barshay
Joseph Baechler
Michelle Baker
Ana Maria Baquero
Veronica Barragan
Bruce Batchelder
Sally and Stephen Berenzwieg
Anna Berndt
Robert and Joan Bettinger
BioMedCom
BioPlus Specialty Pharmacy
Rochelle G. Blum
Shelly Blum
David Brigman
Betty Brigman
Jonathan Brooks
Sheila Brooks
Wendy Brown
Daisy Bueno
Karla Bueno
C&C Insurance
Caldora Lighting Design
Becky Capogreco
Carlos and Becky Carballo
Bob and Beth Carlin
Mark Carlin
Fairy Carter
Lisa Cartwright
The Cesta Family
4
Val Cerutti
Ray and Onni Cesta
Emelie Chang
Clarin Eye Care Center
Tim and Leslie Clark
Clover Systems, LLC
Andrea Coe
Colorado Jet Sales, LLC
Community Bank
Christi Connell
Rafael Coquis
Cow Licks Kids Salon
Ken Crandall
Chris Daly
Frederick DeCamp
Andrew de La Fuente
Juan de La Fuente
Rosemary de la Heria
Len and Ruth Denbin
Federico Diago
Cindy Diamond
James Dilorenzo
Andy DiMarino
Vashti and Ileana Dolan
Jorge and Madelyn Dones
Maria Dones
Cece Dykas
Bernard Ebner
Edward Jennings Attorneys
at Law
Jay and Joan Eichel
Elephantito
Manny and Carolina Escobio
John and Janelle Espinosa
Nicky Espinosa
Norma Valdes Everse
Lori Fabry
Roni Faerman
Trudi Fahey, MD
Claudine Faifer
Stephanie Farah
Adriana Faria
Fast Signs
Maria Feldman
Monica Felzer
Matthew Fenton
Pedro Fernandez
Raul Fernandez
FFP, LLC
Kenneth Flicker
Janell and Raymond Flowers
Martin Frallicciardi
Ulises Frallicciardi
Sidney Freedland
Natalia Fonseca
Steve and Barbara Forman
Danielle Forte-Weiselberg
Duarlin Garay
Jaime and Elizabeth Garcia
Yamida Garcia
Hector Garcia-Ortiz
Renea Gargiulo
Charles Gerrits
Martina Gerrits-de Groot
GDZ Computer Services
Robert Gilman
Global Ocean Security
Technologies
Bettye Grant
Jennifer and Chuck Green
Damaris Greenfield
Aimee Gonzalez
Ketty Gonzalez
Group M
Norman and Marilyn Goldberg
Steve and Joan Greenfield
Maurice Gusman Foundation
Russell Hamilton
Alison Harris
Stephen and Deborah Hill
George Hitt
H.J. Ross Associates
WINTER 2013 • LIFELINE
Amy and John Hook
Giles and Elba Horrocks
Jessica Hughes
Lilian Izaguirre
Jag Medical Associates
Sham Jagnanan
Ed Jennings
William and Mary Johnston
Angelique Jong
Marion Judd
Barry Kates
Tati Katz
Jeffrey Keller
Linda Keller
Otto Keller
Kings Bay Pediatrics
Paul Klimek
Richard Krissel
Alan and Rose Kurzweil
Law Offices of
Russ E. Robbins, P.A.
Leder Global Solutions
Steven Levin
Luis Lizarraga
Michelle Longsworth
Marisol Lopez-Belio
Andrea Luchsinger
Scott Lyden
Kathy Lytle
Nikita Lyons-Murray
Megan Magee
Florencia Maggi
Marty Malaga
Patricka and Cynthia Malambri
Lori Martin
Debbie Martinez
Alexandra Matos
Don McNeil
Rhonda Lynn McNeil
Paula McKinney
Fernando Mendoza
Carol Milstein
David Milstein
Jennifer Milstein
Lizette Mishiev
Don and Gail Mitzner
Michelle Mojica
Alvaro Molina
Kevin Morrissey
Oliver Moses
Elizabeth Mountcastle
John Musumeci
Maria Negrin
Maria Nieto
Harry and Sally Nosanchuk
David Nugent
Carlos Nunez
Liliana Olivares de Machler
Velyne Genece Oloye
Peter O'Malley
Palmetto Bay Village Center
Christine Parker
Tony Parker
Philip Paul
Alex Perez
Gregory Pensak
Larry and Margaret Pensak
Richard and Vivian Pensak
Virgilio Penso
Ileana Perez-Salom
Doris Perlman
Karen J. Pery
Tom Phillips
Allison Plaud
Vito Pisani
Sixta Portalatin
Nathan Poss
Andrea Potash
Premier Dental Care
The Printing Post
Pro Performance Physical
Therapy and Wellness
Project 3815, LLC
Fernando Puig
Pure Skin & Beauty
David Ramirez
Gloria Ramirez
Eileen Ramos
Carol Rash
Chris Ricci
Dan and Katy Ricci
Laura Robbins
Manolo and Reidy Rodriguez
J. Roggenburg
Debbie Rogginburg
Dr. Pedro and Rosangela Roque
Kari Ruben
Jamie and Laura Rubin
Wayne Rundell
Natasha Saavedra
Ira and Eileen Salk
Jon and Robyn Salk
Kenneth and Leslie Salk
Russell and Jennifer Salk
Adriana Sanchez
Alex and Janette Sanchez
Miriam Sanchez
Gloria Sangare
Bejai Sanichara
Peter Santos
Billie Scarboro
Liliana Scarpetta
Beatriz Scarpetta de Preschel
Muriel Scemla
Sebastien and Sandy Scemla
Dawn Schlesinger
Michael J. Schlesinger, P.A.
Craig Schmidt
Wendy Schreck
Benjamin Schwartz
Seminole Nation
Fran Sevcik
Lorraine Shapiro
Stephen Shapiro
Craig Shelanskey
Sheldon Siegel
Syma Silverman
Scott Simon
Skin and Cancer
Associates LLP
Lorena Soulages
Gilda Spea
Tracey Spiegelman
Robert Steigele
Bobby and Sorrell Stein
Velia Szeinbein
Alina Tapanes
Chris Tejiram
Tel Aviv Texaco
Jackie Thayer
Rick Thomas
Natalie Thompson
Marilyn Tolley
Tours Break Away
Ed and Sandi Tucker
Adam Tyler
United Way of Miami
Al Valdes, Jr.
Carlos Vara
Roberto Vazquez
Felipe Vergara
Melinda Vergara Territoriale
Laura Villarreal
Denise Vuono
Dawn Walker
Virginia Walker
Gerald and Gwen Ward
Fiorella Warger
Herbert and Donna Weber
Gloria Weisbrod
Max Weintraub
Whipporwill Pines
Associates, Ltd.
Dylan White
Pamela Williams
Tom and Natalie Williams
Alexandra Wilson
Scott Wise
Bruce Wong
Herbert and Susan Zarkin
Kris Zaparaniuk
Jose Zreik
$1 - $99
Francis Abad
Vacilisa Abreu
Absolute Demolition, Inc.
Anthony Acevedo
Kamleta Adit
Aimee Aguiar
Milagros Alavarado
Frank Albarracin
Phoolmatie Aldana
Amanda Aldecoa
Fazelia Ali
Olga Alonso
David Alonzo
Maria Fernanda and
Veronica Alvarez
Dianne Amador
Roxana Nunez Ambrosini
Amore Family
Amy Anderman
Dafne Anderson
Elizabeth Andrade
Myriam Andrade
Cristina Arboleda
Joseph A. Arenda, MD
Jimmy Arias
Lawrence Aronow
Miguel Ascarrunz
Artipelle
Artistic Vibes
Jorge Azel
Cathy Baker
Cynthia Baldi
Christina Balseiro
Bank of America
Diana Baquerizo Mota
Ralph and Veronica Barba
Keosha Barrett
Lindsay Bartels
Demetra Baxter
Bill Beckman
Rodrigo Bellettini
Cherie Benjoseph
Susan Benjoseph
Pauline Berman
Carole Bernstein
Jennifer Bertot
Lilliam Bervis
Ingrid Besserer
Nikki Betts
Claudia Bierschenk
Clayton and Joyce Blue
Richard Bonchick
Sonia Bosque
Debbie Bouchard
Rachel Boyman
Joan Bozsoki
Kellie Brannon
Brannon Specialties
Julissa Bravo
Dan Briggs
Deena Brito
Brannon Brittain
Anne Brogan
Howard Brooks
Phyllis Brooks
Ellen Brous
Elizabeth and Terrance Brown
Valerie Bruein
Christopher Brunk
Daniel Buigas
Jim Bundy
Jose Burgos
Wellamo Burkhead
Andrea C
Miguel Cala
Iris and Robert Calle
Nicole Caldwell
Jan Cameron
Lissa Cano
Rosa Carbone
John and Carmen Carden
Beatriz Cardona
Heather Carlisle
Leoncia Carrasco
Sarah Castano
Yurusara Castellano
Pablo Castellon
Carlos Castillo
Alfredo Cepero
Bruce Ceres
Johnna Cesta
Marge Cesta
Robert Chang
Kuan Cheang
Lori Chencin
Fiorella Chirito
Velia A Ciliento
Citiwide Financial Services
Danielle Clark
Joseph and Irma Clark
Victoria Collins
Linda and Justin Colon
Gabrielle Coneybeare
Wendy Connolly
Sandra Cornett
Kenny Cortina
Laurie Cowan
Fernando Crespo
Diego Cruces
Juan Cruz
Susan Culmo
Owen and Debbie Culpepper
Renay Cummings
Akim D
Kathy D
Dawn David
Judy Davidson
Lani Davis
Louis De La Costa
Coquin de La Fuente
Juan Bruno de La Fuente
Barbara de La Noval
Miranda de La Noval
Pam DeGroot
Dale Denio
Gleydiane Deoliveira
Charles DeWalt
Elena Diaz
Gerson Diaz
Juan Diaz
Karina Diaz
Eric Diaz-Padron
Lori DiChiara
Louis DiCriscio
Emma Dieguez
Sandra Dieguez
James Dillon
Thomas and Kathleen Doherty
James Dolan
Angel Dones Jr.
Stacy Dorb
Adrian Duranona
Norca Duranona
Arturo Durazo
Kathleen Dyer
Eva Early
Melodee Ebel
Todd and Stephanie Eisner
Doreen Erriah
Rosa Estorino-Hills
Express Travel
Cristina Faes
Sam Farajzdeh
Alicia Farinas
Dylan Farrah-Popham
Isidore and Joy Feingold
Matthew Feldman
Gayle Felzer
Alberto Fernandez
Andy Fernandez
Wanda Fernandez
Dawn Ferrari
Michael Ferraro
Francisco Figueroa
Karen Fishman
Robin Flaks
Denise Flanagan
Bruce Fletcher
Becky Fliegel
Sharella Flowers
Frank Fortune
B Rachelle Fowler
Cathleen M Fox
Elba D. Frallicciardi
Bethany Frankel
Humberto and
Mercedes Franquiz
Neil Frick
Lisa Fuentes
Maria Fuentes
Adam and Dana Fulghum
Nestor Gagliardi
Dan, Alina, Matt and
Isa Gagnon
Ana M. Galavis-Dellepiane
Jeff Gale
Jennifer Garay
The Garcia Family
Cristina Garcia
Oscar Garcia
Teresa Garcia
Lisa Garcia-Ortiz
Lina Gastelu
Ana Gaviria
Edgar Gazebo
Ann Geisler
Nicolette Gerrits
Chiara and Chad Gessler
Lastenia Gomez
Liliana Gomez
Sandra Gomez
Marie Goldweber
Carmen Gonzalez
Daniel Gonzalez
David Gonzalez
Diana Gonzalez
Eduardo Gonzalez
Elizabeth Gonzalez
Frank Gonzalez
Sarah Gonzalez
Susan Gonzalez
Tony Good
Sandy Goodman
Vivian Gosselin
Christine Gosselin Losada
Jim and Hilary Gottlieb
Jim Graham
Maria Granada
Haley and Shannon Graves
Diane Gray
Jane Greenberg
Richard and Edye Greene
Stephen and Robin Greene
Michael Greenland
Taylor Griffin
Werner and Diane Grob
Dilia Grossman
Barbara Grosz
Bernadette Guilbert
Stephen Gula
Mayra Gulla
Diane Gumbinner
Alex Gutierrez
Diana Gutierrez
Ben Haire
Nick and Jamie Hammer
Ben Hannan
Brittany Harrell
Kimberly Harrell
Thomas Harrington
Hartly Personnel
Sebastian Heer
Felicia Hepburn
Catalina Hernandez
Margine Peralta Hernandez
Raul Hernandez
Rommel Hernandez
Marta Herrero
Derek Hodes
Madi Hoesten
Al and Nancy Hoffman
Whitney Holland
Sally Hollander
Melissa Holloway
Cathy Holmes
Jason Holstine
Jess Hoppe
Eileen horne
Cindy Howard
Corey Ann Howard
Rich Hreschak
Fabiola Ibarra
Alyda Inoa
Sonia Irigoyen
Harry Irizarry
Amy Jackson
Jill Jacobs
Leslie Jacobson-Ferrara
Raj Jagnanan
Carmelo Jimenez
Josefina Jimenez
Neil Johnson
Jennifer Jones
Irene Jose Sala
Hector and Kenia Junco
Georgia Justice
K.R. Kilgore Holdings, LLC
Kyle Kat
Paula Kaye
Steve and Lori Kaye
Paul Keeling
Geri Keenan
Susana Keller
Angie Kemmer
Phyllis Kennedy
Vess Kerkeniakov
Kathy Kernan
Andrea Kerner
Brian and Charlene Kessler
Mitchel Kessler
Omar Khurkout
Jan King
Mark Klages
Tricia Kleinberg
Scott Kline
Shari Kline
Rob Klostermeyer
Len Kolencik
Derek Kong
Paula Koppel
Vanessa Koppel
Sridhar Korella
Laura Korkowski
Bonita Kormos
John Krissel
James Krist
Elizabeth Krohn
Dana Kuhn
Myriam Lagomasino
Olga Lagomasino
Miguel Laguna
Melissa Lallo
Chris Lamanna
Laura Lancaster
Bob, Arline and
Bethany Laquerre
Ari Laski
Fresnel Laurent
Dawn Leblanc
Sherri Leiser
Donna Lemon
Len Bujnicki and Associates
Margarita Leon-Carmenate
Bernice Leporati
Ryan Leventhal
Shanna Leventhal
Joe and Sheryl Lewis
Lou Anne Liderman
Wendi Lipsich
Jay and Kim Little
Mark Little
Daniel Liy
Ivonne Llosa
Raul Lock
Lynn Logan
Jesus M. Lopez
Julio Lopez
Marina Lopez
Victor Lopez
Jerry and Linda Lorenz
Donna Loshusan
Natalie Lotycz
Ed and Nancy Lowey
Jamie Lynch
Constance C. Lyons
Audrey Mack
Shar-Ron Maddox
Christian Magnell
Andrew and Madison Maingot
Penny Maitner
Jenny Majer
Esperanza Manzur
Khemraj Maraj
Mara Maralit
Ben Margerum
Lori Margolis
Nellie Marie
Marcelo Marim
Patti Martin
Andre Martinelli
Magaly Martinez
Michelle Martinez
Saylin Martinez
Karin Mas
Liane Mascaro
Harold Matias
Marion Mau
Min-Ae Jackie Mayhew
Christiana Mayorga
Fredy and Annie Mazariegos
Nakia McCallum
April McCann
Kelly McCann
Kim McDonald
Lili McFeely
Nate McMillan
Zee McMillan
Carol McNally
Lily Medel
Alejandro Mejer
Frances Melgaard
Grant Melgaard
Todd Melgaard, Jr.
Angie Mena
Antoinette Mena
Claudia Mena
Erik Mena
Milagros Mendola
Dennis Mendoza
Leslye Mendoza
Sebastian Mendoza
Vanessa Mesones
Johnny and Roxanne Mestre
Lourdes Metcalfe
Andrea Mientkiewicz
Mary Gabriela Migoya
Jonathan Miller
Crystal Mindley
Bob and Vickii Minnaugh
Rosie Mirabal
Michael Mishiev
Andrew Mobayed
Bibi Mohamed
Lauren Monteagudo
Lionel Montells
Maria Mora
The Morales Family
Christopher Morales
Jonathan Morales
Richard Morales
Angelitta Morency
June Moretti
Frances Moseley
Mr. Stich Corp.
Samuel Muckunlall
Barbara Mujica Matias
Alina Mulet
The Mural Project
Maureen Murphy
Cassandra Musumeci
Sandra Muvdi
Rebecca Nastasia
Jonathan Navarro
George and Iris Negron
Melanie Nennig
Yamilet Nieves
Jill Nisson
Christopher Nix
Myra Novak
Jeanette Nunez
Julio Nunez
Julius Nunez
Karen Oddone
Jennifer O'Kuhn
Peter Oldbury
Alfredo Oliva
Mabel Olivera
Gavin Olson
Gisele Omores
Robin Orenstein
Betts Ordelheide
Andre Ordine
Erick Ortega
Maria Ortiz
Valerie Ortiz
Peter and Patricia Osterman
Reyna Oviol
Maria Carola Padilla Parra
Becky Padron
Chrissy Padron
Lea Padron
Manual Padron
Jon Page
Estephanie Palacio
Manny Pallango
Palm Beach Bagel
Barbara Panzer
Isabel Pascual
Steven and Debbie Pasquale
Trish Pasquale
Mary Paul
Graciela Paula
Alfida Peguero
Lauren Pelaez
Tiffany Pena
Melanie Pensak
Thais Penteado Perrella
Lexus Pereira
George Perera
The Perez Family
Ivonne Perez
Anette Perry
Kathleen Phillips
Stephanie Phillips
Paula Picow
Miriam Pimentel
Nicole Pimentel
Rene Pimentel
Amarilis Pina
Yakel Pina
Elda Pineda
Pita, Del Prado & Munoz
Seymour Polishook
Sy and Priscilla Polishook
Dina Popper
Carlos Porta
Ethan Potter
Robin Potter
Johanna Poveda
Cecilia Prado
Derek Prieto
Mary Prindle
James Purcell
Lourdes Quesada
Fanny Quevedo
Freeman Quick
Gladys Quinlan
Richard and Carole Quinn
Astrid Quintanilla
Ralf's Barber Shop
Paul Raitano
Abigail Raiz
Amanda Ramos
Marta Ramos
Carlos Rapaport
Robert Rapaport
Samantha Reiss
Margarita Restrepo
King Reyes
Sally Ricci
Aristides and Teresita Rivera
Ernesto Rivera
John and Cindy Rivera
William Rivera
Amy Roberts
Elisa Robbin
Jason Robbin
Luis Robles
Solange R. Rodrigues
Adriana Rodriguez
Bradley Rodriguez
Carmen Rodriguez
Danielle Rodriguez
Keren Rodriguez
Maria Cristina Rodriguez
Pamela Rodriguez
Michael and Kimberly Rohelle
Sherri Rojhani
Harley Rollins
Edil Roman
Marty Romeo
Barbara Ronda
James Roof
Kay Roosa
Arlene Rosado
David Rosario
Clifton and Greta Rose
Melinda Rosenthal
Carolina Rosero
Howard and Ingrid Roskin
Rachelle Rubin
Willliam Rubin
David Rubinstein
Andres Ruiz
Hiram Ruiz
Maria Carolina Ruiz
Rey Ruiz
Roberto and Roxana Ruiz
Vanessa Ruiz
Jennifer Ruth
Deanne Saavedra
Brenda Salagado
The Salermo Family
Al and Charlotte Salzman
Jacob Sanchez
Julie Sanchez
Lourdes Sanchez
Maribel Sanchez
Melanie Sanchez
Oscar Sanchez
Patria Sanchez
Rhina Sanchez
Victor C. and
Teresita V. Sanchez
Rani Sanichara
Sylvia Sannia
Renee Sansaricq
Maria E. Santaella
Rodence Saintil
Guisella SantoDomingo
Jonathan Sargenton`
Denise Schacher
Colleen Schiff
Denise Schneider
Rachelle Schneider
Bella Schuster
Joyce Schuster
Judy Schwartz
Robert and Sally Schwartz
Jeff Schorr
Manju Seeram
Jessica Seiden
Charlene Serrano
Carlos Sevilla
Semilla
Renata Sena
Ronald F. Sevcik
Taijpaul Sharma
John and Magdalena Shaw
Ed and Harriet Shea
Jasmine Shedden
Irving and JoAnne Shulkes
Naomi Siegler
Michelle Silverman
Jeffrey Silverstein
Scarlett Silwany
Keith and BJ Simmons
Teri Singer
Radica Singh
Marianne Sioli
Scott Sklae
Norman and Audrey Skopp
Nancy and Frank Slodares
The Smith Family
John and Nancy Smith
Steven and Carol Smith
Rosario Solares
Brian Solish
Staci Solomon
Marisel Sordo
Judith Sorensen
Emily Sosa
Jude Sosa
Elsa Maria Sosa-Hernandez
Jack and Phyllis Spear
Speedy Eagle Trucking, Inc.
Heather Spencer
Michael Stacks
Joan E. Stanton
Jeannine Stemmer
Suzanne Stewart
Sheryl Stiefel
Cheryl Stolow
Laura Strehle
Evelyn Suazo
Sandra Sueiras
R. Swentek
Susan Swindle
Richard and Marilyn Swoiskin
Christina Tano
Laura Tanton
Amanda Tanzer
Henry Tanzer
Michelle Tanzer
Taylor & Griffith PA
Claire Taylor
Walter and Mary Taylor
Larry Teal
Steve Tejiram
Jessica Telchin
Marc Tendler
Bradford Thomas
Nicole Tichauer
Philip and Siobhan Tomazic
Arelis Torres
Juana Torres
Trimline Design Center
Yurika Tsuji
Kurt Tuckett
Ellen Turko
Samantha Uribe
Yesenia Valdes
Al and Rosa Valdez
Nataly Valencia Montero
Angela Valentin
Kelly Vallejo
Claudia Van Essen
Francisco and Maria Varona
Ziemely Vazquez
Charles Vedder
Mitzy Vega
Maritza Velasco
Jacqueline Vera
Kim Vernon
Daniel Villegas
Maria Vina-Rodriguez
Carlos Vivanco
Lucy Vives
Sussette Vizcaya
Susan Waleski
Clint Walker
Jerrold and Francine Walker
Jerry Wallace
Vincent Warger
Ellen Webb
Savannah Weiss
Megan Weil
Heather Weinbrum
West Flagler Travel Agency
Scott and Jo Weston
Randi Winter
Jack Winters
Lisa Wise
Mike Wisniewski
Dan Wolfe
Art Wood
Jill Wood
Mamie Wynn
Beverly Yager
Keith Youngswick
Isaac Zavala
Isaiah Zavala
Larry Zavala
Larry Zavala, Jr.
Philip Zerbe
Alina Zimbelmann
Sharon Zitrin
Jeanean Zunk
WINTER 2013 • LIFELINE
5
Welcome to Our New
Staff Member
In Memory of and
Donor Recognition:
Tory Gilliam
EULALIA CASTANO
The Castano/Arrebola Family
Tory Gilliam is the new Development Assistant
for the Florida Hemophilia Association. He is a
recent graduate of the University of Miami with
a degree in Marketing. Prior to joining the
Florida Hemophilia Association, Tory worked at
the Frost School of Music at UM in the Office of
Development and Special Events, planning fundraising events,
writing grants and managing local marketing campaigns.
CRAIG WATTS
The Watts/Thomas Family
ANF Group, Inc.
Gallo Herbert Lebolo
Welcome to Our New
Board Member
Myra Novak
Myra is the newest member of the Board of
Directors. She is an Intelligence Officer with the
Florida Army National Guard as well as an
active duty veteran of the Army. Prior to joining
the Board of Directors, Myra was involved in
many FHA events and served as a team captain
for the 2012 Hemophilia Walk in the Jungle.
JWR Construction Services
Pain is bright red
It tastes like sour candy
It smells like a hospital
And reminds me of my surgery
It sounds like an ambulance
Poem submitted by
Justin Brigman
Pain makes me feel like staying in bed
SAVE THE DATE • SAVE THE DATE • SAVE THE DATE • SAVE THE DATE
30th Annual Family Education Symposium
NEW DATE!
NEW LOCATION!
September 6 – 8, 2013
Embassy Suites West Palm Beach
1601 Belvedere Road, West Palm Beach, FL 33409
Stay tuned for more information!
WINTER 2013 • LIFELINE
7
NHF News • January 2013
Progress Continues in Hemophilia
B Gene Therapy Study
I
n December 2012, investigators from the Memphis, TN-based St. Jude Children’s
Research Hospital provided the latest progress in a breakthrough hemophilia B gene
therapy study that began in 2010. A single intravenous injection of this gene therapy into
patients with hemophilia B activates the production of small amounts of factor IX (FIX), the
deficient protein. The report was presented at the 54th Annual Meeting and Exposition of the
American Society of Hematology (ASH), held December 8-11, 2012, in Atlanta, GA.
Researchers from St. Jude and the University College London (UCL) Cancer Institute
have successfully used adeno-associated viruses (AAVs) as delivery vehicles, or vectors, to carry
the genes that trigger the production of the factor IX (FIX) protein, which is lacking in people
with hemophilia B. AAVs deliver the genetic material into living cells to sustain therapeutic
effect without causing disease or triggering significant immune responses. In addition, they
often target liver cells, which manufacture FIX.
Investigators presented data at the ASH conference on the first eight patients enrolled in
the study, all of whom generated increased levels of FIX. Three of the patients needed fewer
infusions of FIX concentrates, the other five no longer needed any treatment.
Overall, FIX levels, which were virtually nonexistent in these patients before the study,
increased from 1%-6% after receiving the therapy. “Anything over 1 percent will improve the
clinical course of the patient” said Arthur Nienhuis, MD, a member of St. Jude’s Department
of Hematology whose lab helped develop the therapy method. “Clearly, the treatment does
work.”
The researchers envision eventually testing the therapy on children. They hope to speed
up the process by which the vector is created. For the trial, it took about six weeks to create
enough vector for the eight study subjects. Studies by other researchers at other institutions are
needed to duplicate the results on a larger number of people.
Source: TheRepublic.com, December 11, 2012
Continúan los avances en el estudio
de la terapia génica para el
tratamiento de la hemofilia B
E
n diciembre de 2012, investigadores del St. Jude Children’s Research Hospital, en
Memphis, TN, informaron del más reciente avance en un importante estudio de terapia
génica para el tratamiento de la hemofilia B que comenzó en el 2010. Una sola inyección
intravenosa de dicha terapia génica en pacientes con hemofilia B activa la producción de
pequeñas cantidades de factor IX (FIX), que es la proteína deficiente. El informe se presentó en
la 54a Reunión y Exposición Anual de la Sociedad Estadounidense de Hematología (ASH, por
sus siglas en inglés), que se celebró del 8 al 11 de diciembre, en Atlanta, GA.
Los investigadores del St. Jude y del University College London (UCL) Cancer Institute
han usado con éxito virus adenoasociados (AAV, por sus siglas en inglés) como vehículos
transportadores, o vectores, para llevar los genes que desencadenan la producción de la
proteína del factor IX (FIX), que es la proteína que les falta a las personas con hemofilia B. Los
AAV llevan el material genético dentro de las células vivas para mantener el efecto terapéutico sin
producir enfermedad ni desencadenar respuestas inmunitarias importantes. Además, estos virus a
menudo tienen como objetivo las células hepáticas, las cuales producen el FIX.
En la conferencia de la ASH, los investigadores presentaron los datos sobre los primeros
ocho pacientes inscritos en el estudio, todos los cuales produjeron mayores concentraciones del
FIX. Tres de los pacientes necesitaron menos infusiones de concentrados del FIX, y los otros
cinco ya no necesitaron ningún tratamiento.
En términos generales, las concentraciones del FIX, las cuales eran prácticamente
inexistentes en estos pacientes antes del estudio, aumentaron entre 1% y 6% después de recibir
la terapia. “Cualquier aumento por encima del 1% mejorará el curso clínico del paciente”,
expresó el Dr. Arthur Nienhuis, miembro del Departamento de Hematología del Hospital St.
Jude cuyo laboratorio ayudó a desarrollar el método terapéutico. “Evidentemente, el
tratamiento funciona”.
Los investigadores prevén en un futuro probar la terapia en niños. Esperan acelerar el
proceso mediante el cual se crea el vector. Para el ensayo, tomó alrededor de seis semanas para
crear suficiente vector para los ocho participantes en el estudio. Se necesitan estudios por parte de
otros investigadores en otras instituciones para repetir los resultados en un número mayor de
personas.
Fuente: TheRepublic.com, 11 de diciembre de 2012
10
WINTER 2013 • LIFELINE
Laser Therapy for Gum Disease
Benefits Bleeding Disorders
Patients
A
Texas periodontist is championing a laser procedure to correct chronic
periodontitis, inflammation in the gums as a result of dental plaque.
Chronic periodontitis is a common condition, affecting approximately half of
U.S. adults. If untreated, it can lead to tooth loss. Traditional treatment is invasive,
expensive and time consuming, requiring the cutting away of sections of the gums
to access the area for cleaning and bone regeneration. But Ahmed El-Halaby, DDS,
MSD, of Pinnacle Implants & Periodontics prefers a simpler approach known as
laser periodontal therapy.
“With the laser, the way it works is you apply the laser to the diseased pockets
of the teeth, and the laser can tell the difference between healthy tissue and diseased
tissue,” said Halaby. This is in contrast to the older “cut-and-suture method,” which
can actually lead to the removal of healthy tissue, he said.
Halaby sees particular advantages of laser periodontal therapy for people with
bleeding disorders. By using laser-based therapy, an individual with a bleeding
disorder could forgo the invasive procedures and prolonged bleeding often
associated with dental care. Halaby explained that the laser coagulates the blood,
further minimizing the risk of bleeding.
Decisions regarding oral surgery or any other medical procedures that may be
associated with excessive bleeding should be made in close consultation with the
professional staff at your hemophilia treatment center.
Source: News-Journal.com, November 29, 2012
La terapia con láser para la
enfermedad periodontal
beneficia a los pacientes con
trastornos hemorrágicos
U
n periodoncista de Texas está abogando por un procedimiento con
láser para corregir la periodontitis crónica, es decir, la inflamación de
las encías a consecuencia de la placa dental.
La periodontitis crónica es un padecimiento frecuente que afecta
aproximadamente a la mitad de los adultos en los EE. UU. Si no se trata,
puede llevar a la pérdida de piezas dentales. El tratamiento tradicional es
cruento, costoso y toma tiempo; es necesario cortar zonas de las encías para
tener acceso al área con el fin de limpiar y permitir la regeneración del hueso.
Pero el Dr. Ahmed El-Halaby, DDS, MSD, de Pinnacle Implants &
Periodontics prefiere un enfoque más simple conocido como terapia
periodontal con láser.
“Con el láser, la manera en que funciona es que se aplica el láser en las
bolsas periodontales afectadas, y el láser puede diferenciar entre el tejido sano
y el tejido enfermo”, indicó Halaby. También dijo que esto se diferencia del
antiguo “método de corte y sutura”, que de hecho puede llevar a que se
elimine tejido sano.
Halaby encuentra ventajas específicas de la terapia periodontal con láser
para las personas que padecen de trastornos hemorrágicos. Al utilizar la
terapia con láser, la persona con trastorno hemorrágico puede evitar los
procedimientos invasivos y la hemorragia prolongada que con frecuencia se
asocia a los tratamientos dentales. Halaby explicó que el láser coagula la
sangre, lo que disminuye aún más el riesgo de sangrado.
Las decisiones acerca de la cirugía bucal o cualquier otro procedimiento
médico que puede estar asociado a un sangrado excesivo deben tomarse tras
consultar de manera minuciosa con el personal profesional del centro para el
tratamiento de la hemofilia al que usted asiste.
Fuente: News-Journal.com, 29 de noviembre de 2012
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
Barbie Arrebola
Vice 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
Design and Production:
Group M, Advertising & Design
305-235-2538
WINTER 2013 • LIFELINE
11
Florida Hemophilia Association
(Formerly known as Florida Chapter, NHF)
915 Middle River Drive, Suite 421
Ft. Lauderdale, FL 33304
day,
Satur
, 2013
May 4
d
e Islan
l
g
n
u
J
3rd Annual
“Walk in the Jungle”
www.hemophilia.org/walk
Participate. Volunteer. Donate.