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The Official Newsletter of the Florida Hemophilia Association
WINTER 2015
INSIDE
5th Annual Walk in the
Jungle
Executively Speaking
Page 2
NHF News
Page 5
Community Corner
Page 7, 10, 13
SATURDAY,
MAY 2, 2015
Jungle Island
FHA Resource Center
Page 19
Registration/Check-In: 7:00am
Walk Start Time: 8:30am
“SAVE THE DATE”
Men’s Program-Hollywood
March 15
5th Annual Walk
in the Jungle
May 2
Dolphin Day Camp
June 12
June 18
Boggy Creek
July 6-11
32nd Annual Family Education
Symposium
July 16-19
Teen and Young Adult Retreat
July 31-August 2
Please consider making a donation this month
to our Walk in order to celebrate and honor
all those with bleeding disorders
For questions, contact FHA at (305) 235-0717 or email us at [email protected]
ExecutivelySpeaking
Happy New Year! We’re off to a great start for
2015 with some exciting new programming for
you and your family. Please check out the
website for upcoming programs and activities
that we will be offering throughout the year.
Our biggest fund-raiser of the year is just around
the corner! Now in its fifth year, the Annual
Walk in the Jungle is on Saturday, May 2 at
Jungle Island. So lace up your tennis shoes and
register your team and get started on your fund-raising goal! The
walk website is already up and running so register your team today. I
did! If you’re not ready to start up your own team, you can participate
in ours by joining the Florida Hemophilia Association Blood Drops.
The walk is an activity that families and people of all ages can enjoy.
It’s also 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 Cure we
continue to come together as a community and educate the general
public about bleeding disorders.
MensajeEjecutivo
Feliz Año Nuevo! Empezamos con un gran comienzo para el 2015 con una
nueva programación emocionante para usted y su familia. Por favor,
consulte el sitio web para ver los próximos eventos y actividades que
tendremos durante todo este año.
Nuestro mayor evento para recaudar fondos del año está a la vuelta de
la esquina! Ahora en su quinto año, la Caminata Anual ‘en la Selva’ es el
sábado 2 de mayo en Jungle Island. Así que póngase sus zapatos
deportivos, registren a su equipo y empiecen a trabajar para alcanzar su
meta de recaudación de fondos! El sitio web ya está funcionando de
manera que pueden registrar su equipo hoy. Yo ya lo hice! Si usted no
está listo para crear su propio equipo, puede participar en el nuestro
uniéndose al equipo ‘Blood Drops’ de la Asociación de Hemofilia de la
Florida. La caminata es una actividad que las familias y personas de todas
las edades pueden disfrutar. También ha demostrado ser nuestro mayor
evento para recaudador fondos que nos brinda la oportunidad de
ofrecerle programas anuales, tales como, el Simposio de Educación
Familiar, Almuerzo para las Madres y el Campamento de Dia de Delfines.
A través de eventos como nuestra caminata, el torneo de golf y ‘Volley for
a Cure’ nos seguimos uniendo como una comunidad y educamos al
público sobre enfermedades sanguíneas.
Last but certainly not least, we would like to thank everyone who
supported FHA in 2014. We couldn’t have done it without your
support! You 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 2014 and a list that
highlights the many individuals, corporations, and donors who
supported our worthwhile cause.
Por último, pero no menos importante, nos gustaría dar las gracias a
todos los que apoyaron a la FHA en el 2014. No pudiéramos haberlo
hecho sin su apoyo! Ustedes han hecho posible que nosotros
continuáramos nuestra misión de servir a la comunidad con
enfermedades de sangre en la Florida y ofrecerles programas y servicios
a lo largo de todo el año. A continuación se muestra una tabla que
describe cómo se distribuyeron los fondos en el 2014 y una lista de los
muchos individuos, corporaciones y donantes que apoyaron nuestra
benemérita causa.
I look forward to seeing you all soon!
Espero verlos a todos pronto!
Debbi Adamkin
FHA Executive Director
ALLOCATION
OF FUNDS
2
WINTER 2015 • LIFELINE
Debbi Adamkin
Directora Ejecutiva de FHA
Thank You for Your Generosity
FHA gratefully acknowledges our donors who have so generously contributed to us in 2014
$25,000 and Over
Baxter
Bayer
Pfizer
$15,000 - $24,999
Biogen Idec
CSL Behring
Novo Nordisk
$10,000 - $14,999
CVS Caremark
Octapharma
$5,000 - $9,999
Accredo
BioRx
Coram Specialty Infusion
Services
Emergent BioSolutions
Grifols
Hemophilia Alliance Foundation
Kedrion Biopharma
Walgreen’s Infusion Services
$1,000 - $4,999
At Home Infusion Service
Jorge & Diana Azor
Bob & Beth Carlin
Elise Boston
Community Bank of Broward
CSL Behring Foundation
Matrix Health
TJX Foundation
Soleo Health
Wingmen Foundation
Joseph Ziegler
$100 - $999
211 Broward
Stacy Acker
Debbi Adamkin
Iris Adler
Advanced Service Solutions,
Inc.
Karen Alba
Allstar Auto Body Inc.
Alma Foundation
Ivette Alvarado-Leiderman
Jinniva Alvarez
American Elite Health Group
Ellen Amigo
Barney Amos
Kathleen Andersen
Atlas Metal Industries, Inc.
Joseph Baechler
Ray Bailey
Ghada Ballout
Bank of America Foundation
Andrea Barattini
Peter Barken
Valerie Barnhart
Veronica Barragan
Ana Maria Barrantes
Dr. Luis Barreras
Ilene & Stan Barshay
Michael Bartlett
Belen Jesuit Prep School
Homeroon 8-4
Sally Berenzweig
Margaret Berndt
Robert Black
Enrique Blanco
Janet Blitz
Blue Wave Communications
Brightstar
Buchanan Ingersoll & Rooney
Denis Caldora
Terry Campbell
Rebecca Carballo
Barbara Castano
Paul & Daniela Cepeda
Val & Francine Cerutti
The Cesta Family
CityReach Technologies, Inc.
Leslie Clark
Timothy Clark
Community Bank of Florida
David Confessor
Sabrina & Madison Cooke
Thomas Coon
Rafael & Michele Coquis
Dominic Cozzolino
Ken Crandall
Steven Davis
James DiLorenzo
Charles F. Dionne
Dr. Madelyn Dones
Maria Dones
Angel Dones
Jack Donofrio
Alberto Dosal
Dr. Henry Sharpiro
Joan & Jay Eichel
César Elizondo
Embassy Suites West Palm
Beach
Janelle Espinosa
Nicky Espinosa
Dean Esposito
Roni Faerman
Claudine Faifer
Andy Fernandez
Bruce Fletcher
Sharella Flowers
Natalia Fonseca
Barbara Forman
The Frallicciardi Family
Fraternidad Phi Delta Gamma
Sidney Freedlan
Neil Frick
Randy Furby
Jeff Gale
Yamida Garcia
Jaime Garcia
Edward Gilbert
Denise Gimbel
Marilyn & Norm Goldberg
Valeria Gomes
Marvin Greenberg
Stephen & Joan Greenfield
Group M Advertising & Design
Danielle & Tony Guzzetta
Hadley & Lyden, Inc.
Judy Hasenaur
Alicia Hathaway
Jenny Hellmann
Carlos Hernandez
Marta Herrero
Ronald Hoffmann
Rich Hreschak
Jessica Hughes
Independence Title
Indian Princess Mighty Aztec
Tribe
Lilian Izaguirrre
Omar Jasaui
John G. Espinosa Financial
Group
Eddie Jones
Marion Judd
Michele & Barry Kates
Renee Kelley
Shari Kline
Rob Klostermeyer
Christos Kostelidis
Raghad Koutouby
Rick Krissel
Barbara Kruse
Dana Kuhn
Ashley & Erika Lau
Adriana Lavan
Kelly Lavis
Paul Leboffe
Sherri Leiser
William Leone
Lisa Leventhal
Steven Levin
The Liuzzi Family
Luis Lizarraga
Shelby Madeiros
Florencia Maggi
Daniel R. Maier, P.A.
David Maingot
Martin Malaga
Cynthia Malambri
Todd Maples
Felipe Maramgon
Gabriela Marquez
Leanne Mascaro
Maria McDonald
Jeffery McFall
Rhonda Lynn McNiel
Craig Mears
Daniel Mena
Peter Mercatili
Michelle Meyer
Michael L. Feinstein, PA
Microsoft
Joseph Milana
Carol & Hal Milstein
Bob & Vicki Minnaugh
Don & Gail Mitzner
Andrew Mobayed
Michelle Mojia
Carmen Claudia Molina
Jose Molina
Nelly Montijo
Nereida Montijo
Sharon Morganstern
Morgan-Weiss, LLC
Mosquito Nix
Yadira Munoz
National Powerboats LLC
Tony & Paola Newell
Ocean Chiropractic & Health
Center, Inc.
Nanette O'Donnell
Jonathan Ohebshalom
Peter Oldbury
Liliana Olivares de Maechler
Betsy Oliveira
Peter O'Malley
Elizabeth Ordelheide
Manuel Orosa
Maria Ortiz Carrion
Overseas Group
John Parler
Jeff Parrish
Eva Pate
Hiren Patel
Sky Patrol
Leslie & Phil Paul
Greg & Alex Pensak
Virgilio Penso
Alex Perez
Luciana Periales
Pilates of Boca
Vito Pisani
Plaza Research Corp.
Paul Polito
Sixta Portalatin
Beatriz Preschel
Presidente Supermarket
Chris Ricci
Dan & Katy Ricci
Evelyn Rodberg
Harley Rollins
Jennifer Roselli
Randi & Len Rothenberg
Kari Ruben
Jamie Rubin
Yadhyra Sabater
Ira & Eileen Salk
Robyn & Jon Salk
Ken & Leslie Salk
Sample Czar Inc.
Miriam Sanchez
Maribel Sanchez
Adriana Sanchez
The Sanchez Family
Arlene Santacroce
Melanie Satisky
Muriel Scemla
Michael Schlesinger
Jeanine Schmidt
Wendy Schreck
Shutts & Bowen
Syma Silverman
Steven & Carol Smith
Kathy Smouse
Staci Solomon
Heather M. Spencer
Robert & Lisa St. Germain
Jessica Swann
Mark Taylor
Romeena Tejiram
Melinda Territoriale
Linda & Rick Thomas
Christian Thomson
Bill Tolia
Marilyn & Shawn Tolley
David Topp
Trend by Sebastien James
Sandi & Ed Tucker
Rosita Urbina
Albert Valera
Carlos Vara
Anibal Vega Borges
Maurice Waldman
Virginia & Ronnie Walker
Jerry & Jean Wallace
Mike Walsh
Ed Wassmer
Ralf Weger
Heather Weinbrum
Max Weintraub
Scott & Jo Weston
Ken Wiesenfeld
Scott Wise
Zen Builder
The Ziccardi Family
Zuckerman Brothers, Inc.
$1 - $99
Paulette Aaronson
Ana Acevedo
Acoustical Interiors, Inc.
Athina Adelstein
Sabrina Sayonee Adit
Maria Adriazola
Marlo Agold
David Aguado
Aimee Aguiar
Janeth Aguilera
Yaime Alarcon
Edgar Alarcon
Grey Alba
Aura Alba
Frank Albarracin
Veronica Albright
Mileva Alcantara
Mohani Aldana
Lynn Alexander
Karen Alfson
Euza Allen
Ramon M. Alonso
Olga Alonso
Vivian Alvarez
Steven Amador
Roxana Ambrosini
The Amore Family
Alexander Anchia
Yaremy Anchia
Amy Anderman
Gloria Andino
Miguelita Andino
Anonymous
Francis Aracena
Patricio Arana
Elizabeth Arangoitia
Naila Arce
Michelle Archambault
Jessica Ardente
Reinaldo Ramon Areu, Jr.
Luz Aricape
Sandy Arioli
Juan Aroix
Lawrence & Pamela Aronow
Jackie Arroyo
Aldo Asseo
Mariangely Atiles
Maria Avendano
Ernie Avino
Jorge Azel
Oswald Azua
Stuart Barmen
Shannon Barnes
Nancy Barnhart
Keosha Barrett
Carrie Barroll
Daniel Beaudry
Ethan Becker
Samara Becker
Jody Becker
Susan Bell
Shari Bender
Marnie Bends
Chandni Benimadhu
Lorena Benitez
Susan Benjoseph
Cherie Benjoseph
Erika Berlingeri
Rafael Bermudo
Bridget Berry
Edwin Betancourt
Jessica Bethune
Jorge & Cristy Blanco
Ruth Blitz
Shelley Blum
Jessica Bork
Kendra Bottoms
Jennifer Bowers
Claudia Brabata
Kenny Brehm
Sheila Brooks
Ray Broughton
Dawn Broughton
Elizabeth Brown
Alex Bruno
Kevin Buchanan
Michele Buchanan
Lina Buitrago
Elaine Burdock
David Burge
David Burgeson
Christopher Bugio
Wellamo Burkhead
Bernard Bushell
Jairo Cabrera
Valeria Caicedo
Dominique Cajuste
Gloria Maria Calderon
Raul Calderon
Ana Calero
Dick & Debbie Campbello
Lizzette Campo
Jessica Camuffo
Mercy Canas
Melissa Cano
Tina Capelo
John & Carmen Carden
Barbara Carmichael
Rafael Carnero
Armando Carnero
Jose Antonio Carnero
Andrea Carnero
Xiomara Carrasco
Thomas H. Carroll
Lenore Cartier
Ada Carvajal
Fania Casanueva
Jeffrey Caspi
Reina Castaneda
Steve Caster
Elisa A. Castro
Jennifer Castro
Jairo Cepeda
Marge Cesta
Julie Cesta
Deanna Chandler
Blanca Choy
Brianna Cid
Irma Clark
Allen Coleman
Wendy Colli
Justin & Linda Colon
Ashley Combs
Sibyl Corley
Mercedes Correa
Linda & Richard Costa
Ferchie Covas
Margarita Cruz
Niurka Cruzada
Alex Cuesta
Renay Cummings
Keith Cunningham
Rossana Cutolo Gill
Nancy Danvers
Jaivon Darby
Tracy Darney-Pavlik
Javier Davalos
Eduardo de Boyrie
Dianne de la Cruz
John de la Cruz
Alexandra De La Cruz
Andy de la Fuente
Johnny de la Fuente
Maria de la Fuente
Maylen de la Fuente
Irina De La Osa
Carlos de la Puente Alfaro
Marjorie De Pinho
Luis De Velasco
Elisabeth Deakin
Mike Deem
Milly Dejesus
Pedro Delgado
Deborah Delva
Michael Delvalle
Niccolo Delzoppo
Leonard & Ruth Denbin
Amy Denker
Deland Dent
Yamin Dharamsi
Xander Diaz
Gerson Diaz
Danny Dominguez
Sharon Donohue
Al & Irene Dorazio
Linda Dube
Tim Duncan
Laura Ebbage
(Continue page 4)
WINTER 2015 • LIFELINE
3
Libis Eliette
Stephen Engasser
Chad Eriksen
Carolina & Manny Escobio
Patricia Espinosa Thomson
Leslie Esposito
Sofia Estrada
Ethan Faerman
Dawn Faircloth
Jose & Daysi Fardales
Alicia Farinas
Faster & Easier Computer
Services
David Feather
Nelly D. Febres
Mark Fedden
Joy Feingold
Howard Feldman
Linda Felicio
Zeida Fernandez
Luis Wilfredo Fernandez
Karina Fernandez
Jorge Fernandez
Niurka Ferret
Drew Fink
Cathy Fitzpatrick
B. Rachelle Fowler
Adam Fractenberg
Lee Friedman
Cristy Garcia
Betty Garcia
Alberto Garcia
Carrietta Gaudio
Tracy Germani
Laura Gibson
Cindy Gil-Avila
Tory Gilliam
Nancy Ginart
Talia Goicoechea
Marlen Gomez
Lily Gomez
Ana Gomez
Carmen Gomez
Jorge Gomez
Alain Gonzalez
Carlos Gonzalez
Carmen Gonzalez
Diana Gonzalez
Gus & Maria Gonzalez
Patricia Gonzalez
Corey Gonzalez
Wilfredo Gonzalez
Maria Granada
Janice Graulau
Debbie Green
Frederick Green
Richard & Edye Greene
Jeremy Griffin
CJ Grgisby
Luigi Grijalva
Byron Grijalva
Harold Grimaldo
Cathy Grossberg
Guaranty Commercial Title, Inc.
Mauricio Guizar
Stephen Gula
Monikah Gupta
Danielle & Tony Guzzetta
Patrick Hackshaw
Erik Halvorssen
Belen Hannan
Joe Harlow
James Harrison
Ty & Abby Hart
Rosemary Hartigan
Hartly Personnel Services
Stuart Hegseth
Amanda Hellmann
Monica Herbstman
Arlene Hernandez
Maria & Frank Hernandez
Vivian Hernandez
Carlos Hernandez
Eva Hernandez
Daniela Herrera
Irma Herrera
4
Roberto Herrero
Marcelo Herksovitz
Maria Hidaldo
Isley Hidalgo
Derek Hodes
Elizabeth Hodgins
Larry Hoffman
Al & Nancy Hoffman
Cathy Holmes
Jennifer Horn
Raymond Hudgens
Gerald Irwin
Ana Isaza
Tricia Jackson
Sham Jagnanan
Barbara Jenkins
Patricia Jimenez
Josefina Jimenez
Billie Jimenez
Nancy Jimenez
Dahlia Johnson
Darrelle Johnson
Stacey Joiner
Wendy Jordan
Allison Jordan
Madeline Kahan
David Kahn
Bob & Marcia Kaplan
Denise Kaufman
Paula Kaye
Angela Kemmer
Gloria H. Kepelov
Brian Kessler
Mitchel Kessler
Marie Khoury
Omar Khurkout
Alfonso Klawans
Joe Kleiber
Jennifer Knight
Mayra Knowles
Jon Knowles
Sarah Kopp
Lawrence Korben
Bonita Kormos
Andy Kraich
Lexi Krautman
The Krissel Family
Ann Kruk
Alicia Kuppens
Amy Kutell
Myriam Lagomasino
Anne Lapidos Tindel
Rebekah Lapon
Darcy Lawyer
Rene Lebron
Harry & Joanne Leiser
Charlotte Libov
Justin Lindhorst
James & Sheryl Linn
Little Fish Media
Amir Littman
Claus Litzbarski
Robert Livingston
Rodolfo Llanes
Monica Loayza
Joe LoBello
Elliana Lopera
Diana Lopez
Evelyn Lopez
Jennifer Lopez
Victor Lopez
Mariejacq Lopez
Santa Lopez
Adam Lopez
Michael Lopez
Alina Lopez-Castro
Ana Lorenzo
Jose Lorenzo
Donna Loshusan Lemon
Natalie Lotycz
Diana Louzado
Edward Lubawski
Mrs. Lufbery
Saudhi Lugo
Lindsey Macgruer
Cindy Macrafic
WINTER 2015 • LIFELINE
Lisa Magrane
David Mantila
Danielle Marese
Thomas Markey
Gina Marlieb
Jannet Marquez
Donna Marsh
Martin Martinez
Ingrid Martinez
Selba Martinez
Magaly Martinez
Lauren Martino
Kevin Marulanda
Sammy Matthews
The Matus Family
Liliana Matznick
James McCoy
Liliana McFeely
Thomas & Ursula McGrady
Haley McKenna
Karen McMicheal
Eric McRoy
Larie Mears
Ivette Medina
Karen Meiners
Daniela Membreno
Claudia Mena
Angie Mena
Antoinette Mena
Erik Jeramy Mena
Erika Mena
Milagros Mendola
Elsa & Fernando Mendoza
Jeovanny Mera
Randi Meshel
Vanessa Mesones
Dea Mesquita
Daniel & Judith Mielnicki
Stephanie Miginio
Janice Miller
Lesli Miller
Vicki Mobley
Maria Molina
Elizabeth Molinare
Jeff Monaghan
Amanda Montaner
Ana Montenegro
Dulce Montes De Oca
Milybet Montijo-Cepeda
Christina Mooer
Kim Mooer
Angela Moore
Dania Morales
Albania Morales
Richard Morales
Andrea Morales
Jonathan Morales
Carlos Moreta
Sergio Moreta
Mrs. Moron
Debbie Moroney
Paula & Paul Morrow
Dr. Lawrence Moses
Alina Mulet
Angie Muñoz
Pamela Murphy
William J. Murphy, Jr.
Elaina Naples
Ana Navarro
Jonathan Navarro
Constance & Charles Neely
Debbie Neff
George & Iris Negron
Carlos Juan Negron
Sandy Nieves
Ursula Nieves
Jamiy Nieves
Sol Nieves
Juana Noriega
Deanna Norling
Michael Nourse
Monica Nunez
Julio Nunez
Blanca Nunez Deason
Ana Obando
Joan O'Brien
Jennifer O'Kuhn
Elyssa Olgin
Nicolas Olivas
Suzy Oliveira
Gleydiane Oliveira
Jose Oliveira
Sandra Olmeda
Betty O'Neal
Edith M. Ortega, MD
Angelica Ortiz
Anelsa Ortiz
Tabitha Osorio
Evelyn Osterweil
Ednilean Paduae
Aleax Palen
Thomas Palen
Susan Parce
Thomas Parker
Maria del Carmen Pasos
Shilpa Patel
Tony Patino
Enrique Pazo
Maria Pedrajo
Tiffany Pena
Yonnira Peralta
Janeth Peralta
Penni Perez
Israel Perez
Tania Perez
Alejandro Perez
Liz Perez
Karla Perez
Hernando Perez
Reinaldo Perez
Ivonne Perez-Suarez
Barbara Perino
Mauricio Perry
Karen J. Perry
Kimberly Philo
Ivette Picado
Carolina Pico
Rubens J. Pierami Neta
Miriam Pimentel
Keysel Pimentel
Rene Pimentel
James & Dalia Platt
Seymour Polishook
Pops Corn, Inc.
Leo Poynton
Juan Pozo
Nancy Prather
Laura Prather
Hugh Prather
Valerie Prescott
Debbyann Prescott
Jannet Prussing
Cleopatra Puerto
Joseph Pugliese
Margarita Quinteros
Abigail Raiz
Pedro Ramirez
Elba Ramierz
Elvira Ramirez
Ana Ramos
Amanda Ramos
Scott Ramseyer
Celeste Reidy Matos
Alexandra Rendon
Santa Reynoso
Sally Ricci
Brunilda Rivas
Francisca Rivas
Mara Rivera
Ana Rivera
Emma Rivera
Emmery & Emmy Rivera
Ernesto Rivera
Jaime Rivera
Miriam Rivera
Monica Rivera
Jashira Rivera
Maria Rivera-Albert
Elisbel Rivero
Aristedes Rivero
Lisette Rivero
Nanette Rivero
Stefano Rizzo
Laura Robbins
Jessica Roberts
Daphney Robinson
Alzeth Robinson
Nereida Rodriguez
Oxalis Rodriguez
Edwin Rodriguez
Cecilia Rodriguez
Oraymi Rodriguez
Lia Rodriguez
Crystal Rodriguez
Angel & Louise Rojas
Gianina Rojas
Hilary Roman
Eneida Roman
Diana Romero
Marty Romero
Eduardo Roque
Clifton & Greta Rose
Herbert Rosen
Melinda Rosenthal
Michael Rosenthal
Ingrid Roskin
Nancy Rossero
Eve Rostran
Dawn Rotellini
Leslie Roy
Garrett Royal
Barry Rubin
Steve Rubin
William Rubin
Angie Ruiloba
Jessica Ruiz
Andres Ruiz
Julio Ruiz
Kim Ruoff
Anthony Russello
Marta Saavedra
Jose Saavedra
Ramon Salas
Raul Salgado
Justin Salk
Albert Salzman
Sol Sananes
Adriana Sanchez
Libia Sanchez
Maria Sanchez
Katarina Sanchez
Ranie Sanichara
Renee Sansaricq
Maria E. Santaella
Xenia & Pedro Santana
Hendry Santana
Carolina Santangelo
Jacqueline Santiago
Marcia Sarpi
Craig Schmidt
Jeff Schorr
Erlene Schwamborn
Richard Seaman
Jessica Seiden
Livy Seiden
Randy Seltz
Alicia Seminario
Carmen Seminario
Javier Seminario
Marly Sgambatti
Lorraine Shapiro
John & Maggie Shaw
Sharonda Shaw
Harriet & Ed Shea
Claudia Shirley
Carmen Shiroma
Casey Shore
Norm & Karen Shulman
Carmen Sierra
Michelle Silverman
Teri Singer
Radica Singh
Katherine Sisson
Nancy Slodarz
Auxi Slute
Robert Slute
Charles Smith
Ivan Snyder
Harper Snyder
Mark W. Sokoloski
Rosario Solares
Claudia Soler
Roberto Soler
Suhelen Solorzano
Marisel Sordo
Pam Sossi
Haydee Soto
Phyllis Spear
Danielle Squires
Yvonne Stein
Andrew Steven
Heather Stewart
Iris Straube
William & Susan Styborski
Yosleidy Suarez
Evelyn Suazo
Yasmin Sumar
Gwen Swerdloff
Richard Swoiskin
Ana Tamara
Evan Teitelbaum
Steve Tejiram
Tel-Aviv Texaco
Jessica Telchin
Ursula Thomas
Dayne Thompson
Antonio Tirado
Toro Plus
Barbara Torres
Elizabeth Torres
Raul Trillo
Marco Trimarchi
Nena Trottogott
Tami Trujillo
Kurt Tuckett
Jennifer Ujueta
Joseph Ultimo
Mark Umphrey II
Zameer Upadhya
Kenneth Urrutia
Daymi Valdes
Nicholas Valdes
Roberto Valdes Santiago
Al & Rosa Valdez
Kelly Vallejo
Emily Vallejo
Christine Vandenberg
Frank & Wendy Vann
Mayra Varela
Consuelo Varela De La Flor
Angel Vega
Ellie Velazquez
Raul Vergara
Cristina Verger
Jose Versace
Cyndi Viggiani
Maria Villasis
Canele Villaurrutia
Maria Vina-Rodriguez
Cesar Vinueza
Tania Vizcarrondo
Marjorie Vizcaya
Farristine Wade-English
Patricia Walsh
Leonard Warburton
Rosa Warburton
Donna Watson
Beth Watts
Martin Weinbaum
Danielle Weiselberg
Savannah Weiss
Jim White
Ellen White
Polett Williams
Kim Wong
Kenneth Wright
Hilda Zayas
Janelle Zayas
Luz Zuluaga
Alfred Zweig
NHF News • WINTER 2015
Plant-Based Inhibitor Therapy
Continues to Evolve
S
cientists from the University of Florida in Gainesville (UF-G) and the
University of Pennsylvania (U-Penn) continue to investigate an
experimental, plant cell-based approach to preventing inhibitors and allergic
reactions (anaphylaxis) to clotting factor therapies in people with hemophilia. An
update on their progress was published online, December 16, 2014, in Scientific
American, a division of Nature America, Inc.
Lead investigator Henry Daniell, PhD, director of translational research at the UPenn School of Dental Medicine, and Roland W. Herzog, PhD, a molecular
biologist at UF-G, have, for several years, been working on a technique that
involves encapsulating an orally administered “tolerance-inducing protein” such
as factor IX (FIX) within plant cell walls. When ingested, the bio-encapsulated
protein safely travels through the stomach before reaching the small intestines.
The plant cell wall shields the FIX from being prematurely broken down by
stomach acid. Eventually, microorganisms eat away the cell wall, gradually
releasing the protein.
Building on earlier studies (2010) that successfully used bioengineered tobacco
plant cells to prevent inhibitors and anaphylaxis in mice with hemophilia B (FIX
deficiency), Daniell and Herzog are now turning to freeze-dried lettuce leaf cells
engineered to trigger a high concentration of FIX. Each lettuce leaf cell contains
approximately 10,000 chloroplasts, each structured in such a way to hold very
large volumes of the FIX protein. Chloroplasts are subunits of plant cells, most
often known as crucial components of photosynthesis. Although these
chloroplast-rich plant cells are not equipped to prevent bleeding--plants are
unable to make human clotting factors biologically active--they have shown an
ability to induce tolerance in the immune system to FIX. Researchers have been
developing this novel therapeutic approach for several years to create potential
vaccines against malaria and cholera, and genetically engineered insulin to help
prevent diabetes.
Daniell and Herzog recently took the next step and tested this approach in two
dogs with hemophilia B. They fed both dogs their normal food along with the
engineered lettuce cells converted into a green powder form. There have been
no reports of anaphylaxis or inhibitors in the mice from the earlier study or in
the dogs that recently received the plant-based therapy. “So far, it’s going very
well,” reported Daniell. If this novel oral therapy continues to prevent treatment
complications in animal models, the next step will be to replicate that success in
human clinical studies.
Fuente: Scientific American, 16 de diciembre de 2014
Tratamiento a base de plantas contra los inhibidores
continúa evolucionando
C
ientíficos de la Universidad de Florida en Gainesville (UF-G) y la
Universidad de Pensilvania (U-Penn) continúan investigando un método
experimental basado en células vegetales para prevenir la formación de
inhibidores y las reacciones alérgicas (anafilaxia) contra los tratamientos con
factores de la coagulación en personas con hemofilia. El 16 de diciembre de 2014,
se publicó en Internet (en Scientific American, una división de Nature America,
Inc.) una actualización del progreso que han tenido.
El investigador principal Henry Daniell, PhD, director de investigación aplicada
en la Facultad de Odontología de U-Penn, y Roland W. Herzog, PhD, biólogo
molecular de UF-G, han estado trabajando, durante varios años, en una técnica
que consiste en encapsular una “proteína que produce tolerancia” administrada
por vía oral, tal como el factor IX (FIX), dentro de las paredes celulares de
plantas. Al ingerirla, la proteína bioencapsulada transita de manera segura a
través del estómago antes de llegar al intestino delgado. La pared celular vegetal
evita que el ácido estomacal degrade el FIX antes de tiempo. Finalmente,
microorganismos devoran la pared celular, lo que permite la liberación gradual
de la proteína.
Tomando como base estudios anteriores (2010) que usaron con éxito células de
tabaco manipuladas mediante ingeniería biomolecular para prevenir la
formación de inhibidores y anafilaxia en ratones con hemofilia B (deficiencia del
FIX), Daniell y Herzog están actualmente usando células de hojas de lechuga
liofilizadas genomanipuladas para desencadenar una alta concentración del FIX.
Cada célula de hoja de lechuga contiene aproximadamente 10,000 cloroplastos,
cada uno estructurado de forma tal que puede contener grandes volúmenes de
la proteína del FIX. Los cloroplastos son subunidades de células vegetales,
conocidos mayormente por ser componentes cruciales de la fotosíntesis.
Aunque estas células vegetales ricas en cloroplastos no pueden prevenir las
hemorragias (las plantas son incapaces de fabricar factores humanos de la
coagulación que sean activos), han demostrado una capacidad para inducir
tolerancia del FIX en el sistema inmunitario. Los investigadores han estado
desarrollando este novedoso método de tratamiento durante varios años para
crear posibles vacunas contra el paludismo y el cólera, e insulina modificada
genéticamente para ayudar a prevenir la diabetes.
Daniell y Herzog recientemente pasaron a la siguiente etapa y pusieron a
prueba este método en dos perros con hemofilia B. Les dieron a ambos perros
su alimento normal junto con las células de lechuga genomanipuladas, en
forma de un polvo verde. No se ha notificado anafilaxia ni inhibidores en los
ratones del estudio inicial ni en los perros que recientemente recibieron el
tratamiento a base de plantas. “Hasta ahora, está marchando muy bien”,
reportó Daniell. Si este novedoso tratamiento oral continúa evitando las
complicaciones del tratamiento en los modelos con animales, el siguiente paso
será reproducir este éxito en los estudios clínicos con seres humanos.
Fuente: Scientific American, 16 de diciembre de 2014
WINTER 2015 • LIFELINE
5
Fundraising: You Can Do It Too!
I am the mother of two boys who both have severe hemophilia
A, the youngest with an inhibitor. I work full time, so when Debbi
Adamkin suggested I create a team, become the captain and start
fundraising for the Walk in the Jungle, I was a little overwhelmed
and a lot terrified. I felt I was crazy for even contemplating this.
Who doesn't love CANDY?!?! I even had special requests for
specific candy bars and healthy snacks too. Back to the store I
went.
How in the world was I going to raise money??? When do I
have the time???
YARD SALE! I raided my closet, cleaned out the boys’ room,
and even asked for friends and family to donate items to sell.
Instant hit! I held three yard sales and raised a pretty penny. In
the end, my first year fundraising was a success. Fundraising is
fun! I get to advocate for hemophilia, talk and mingle with
people that I normally wouldn't and
make new friends. We had 32
members on our team that year. We
doubled our team goal and raised
$2,000. I was amazed at what I was
able to accomplish. I realized that
unless you try, you'll never know. I
have patients at my job asking when
I'll be selling candy again. I have
family asking when the next walk is.
I doubted myself in the beginning, but
in the end, I realized I have more
support than I would have ever
known if I had not gotten involved. In being involved in the
bleeding disorders community and all the educational and fun
programs that FHA offers, it feels amazing to know that I'm giving
back, while teaching my kids that hard work pays off and can
actually be fun.
I bit the bullet and went in head first. I spend all my time
working at a doctor's office, so that's where I started. I went to a
wholesale warehouse store and purchased all kinds of different
candy bars, gummies, and snacks,
set them up on my desk at work
along with a brochure that I made
with pictures of my boys explaining
hemophilia and the walk details.
Almost every patient was interested
in supporting the cause by buying
candy and some people even
donated money. The doctors I work
for also contributed. At the end of
the first week, not only did I sell out
of candy, but I actually made a nice
profit. It was really easy, so I
decided to go to the other offices in the building during my lunch
break. I would pass out brochures to the offices and asked if they
would like to participate in the walk and join our team or if they
would like to support us by donating. To my surprise, almost every
office made a donation and EVERYONE bought candy.
I was hooked. I started thinking… hmmm… how could I
raise more money?
WINTER 2015 • LIFELINE
7
Bracelets
FOR A CAUSE
By Victoria Fralllicciardi (11) and Marialex Penso (11)
O
n Sunday, December 6th, our school organized the annual
St. Agnes Academy Christmas Bazaar where vendors sell
all kinds of merchandise and visitors buy their Christmas
presents. We rented a table in advance without knowing exactly
what items we were going to sell, but we did know was that the
money collected would go to The Florida Hemophilia
Association. After deciding on making handmade jewelry, our
mothers who were in Peru for a business trip, helped us out by
picking out unique Peruvian accessories, materials and tools
that were necessary in making cute bracelets and necklaces.
We designed bracelets with threads made up of a variety
of colors and textures. They had beautiful charms and
inspirational words and we sell them at very competitive
prices. In order to create some exclusive bracelets, we cut
up our school uniform skirts into thick strings and gave
them a touch of our own style. We sold more than 100
pieces and everybody was thrilled with them and even after
the Bazaar ended, we continued selling to other customers
in and out of the school. Once we realized how fun this
experience was and knew how much money we raised,
we are looking forward to doing this again in the future.
We choose to donate to The Florida Hemophilia
Association to support Martin (Frallicciardi) and all of
those who suffer from bleeding disorders.
We hoped that we inspire others to make a difference in
helping those with hemophilia around the world.
Victoria and
Marialex
raised $870
Victoria’s brother, Martin, suffers from Hemophilia A (severe).
Both Victoria and Marialex had participated in previous fundraising
events to support the HEMOPHILIA WALK / Team Martin.
10
WINTER 2015 • LIFELINE
LUNCH
4
A CURE
N
atalia Fonseca and some of her friends started the Lunch
4 A Cure Group in 2012 as a way to support kids in
their home country of Brazil. She reconnected with Robyn
Salk on Facebook after seeing that her daughter, who Natalia
used to babysit, had been diagnosed with hemophilia. Robyn
told her about the upcoming Walk and even though she
couldn’t make it to Jungle Island, Natalia knew she had to
support it in honor of Carly. But how would she do it?
In Brazil, it is common to have a big lunch and serve
traditional foods. The group thought this would be the perfect
way to bring everyone together and support a cause. They hit
the ground running and went to local businesses to ask for
donations and they found that people were happy to give. Some
gave food, some gave raffle prizes and some even made
donations! Then, they had to figure out how to get people to
come to this lunch. Natalia talked to her friend who is a web
designer and she made a great flyer. But how would she
promote it? Facebook! Since it was where she reconnected with
Robyn, she thought it would be the perfect place. In the first
year, she was nervous and concerned that the group had taken
on too much. But all of those nerves were put to rest when the
event turned out to be a success!
Three years later, the Lunch 4 A Cure has raised over $3,000
to support the Walk in the Jungle and the group couldn’t be
happier about their success. Natalia gets so emotional when she
talks about it because she has grown to really understand the
difference it makes in the lives of people with bleeding
disorders. Each year, when she calls Robyn to report how much
they’ve raised, it brings tears to their both of their eyes. Natalia
and the Lunch 4 A Cure group are a wonderful reminder of
how when people set their mind to something and come
together, great things can happen!
WINTER 2015 • LIFELINE
13
Second Annual
State Legislative Day
O
n February 11 and 12, the Bleeding Disorder
Coalition of Florida (BDCF) hosted its second
annual State Legislative Day. Volunteers from all
across Florida took Tallahassee by storm to meet with
their local representatives and senators at the State
Capitol. Everyone arrived the night before for a
training dinner, where representatives from NHF and
the Hemophilia Federation of America gave an
overview of the legislative process and tips for
effectively communicating with legislators. The next
day, everyone went to their scheduled appointments.
Legislative days are important to our community
because they ensure that the voice of bleeding
disorders community is being heard! Each year that
we travel to Tallahassee, we build relationships with
legislators and put a face to our cause, which is vital to
ensuring our voice is heard. If you are interested in
advocacy and the BDCF, please email Debbi at
[email protected] to get involved.
FHA is proud to announce a brand new program
for teens and young adults ages 15-21.
NEWAM!
R
PROG
JULY 31 – AUGUST 2
Be on the lookout for more information!
14
WINTER 2015 • LIFELINE
NEW DATE! NEW LOCATION!
THURSDAY, JULY 16 – SUNDAY, JULY 19
HILTON PALM BEACH AIRPORT
150 Australian Ave, West Palm Beach, FL 33406
Look out for registration packets in the mail!
FRIDAY, JUNE 12
SATURDAY, JUNE 18
SPACE IS LIMITED!
Please email
[email protected]
to request forms or for more information.
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.
Applications must be received by June 1, 2015 in
order to be considered for a scholarship.
Awards will be dispersed directly to the institution.
For more information, please contact Debbi at
[email protected]
for the application packet.
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,
Translation:
Roxana Ambrosini, Roxanna Delgado
Design and Production:
Group M, Advertising & Design
305-235-2538
WINTER 2015 • 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