5th Annual Walk. SATURDAY, MAY 2, 2015 Jungle Island

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1 The Official Newsletter of the Florida Hemophilia Association Executively Speaking Page 2 NHF News Page 5 WINTER 2015 INSIDE Community Corner Page 7, 10, 13 FHA Resource Center Page 19 5th Annual Walk in the Jungle SATURDAY, MAY 2, 2015 Jungle Island 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 nd Annual Family Education Symposium July 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) or us at walk@floridahemophilia.org

2 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. Last but certainly not least, we would like to thank everyone who supported FHA in 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. I look forward to seeing you all soon! 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. Por último, pero no menos importante, nos gustaría dar las gracias a todos los que apoyaron a la FHA en el 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. Espero verlos a todos pronto! Debbi Adamkin FHA Executive Director Debbi Adamkin Directora Ejecutiva de FHA ALLOCATION OF FUNDS 2 WINTER 2015 LIFELINE

3 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 - $ 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

4 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 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 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 4 WINTER 2015 LIFELINE

5 Plant-Based Inhibitor Therapy Continues to Evolve Scientists 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 U- Penn 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 NHF News WINTER 2015 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 Científicos 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

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7 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. How in the world was I going to raise money??? When do I have the time??? 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. Who doesn't love CANDY?!?! I even had special requests for specific candy bars and healthy snacks too. Back to the store I went. I was hooked. I started thinking hmmm how could I raise more money? 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. WINTER 2015 LIFELINE 7

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10 Bracelets FOR A CAUSE By Victoria Fralllicciardi (11) and Marialex Penso (11) On 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

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13 LUNCH 4 A CURE Natalia 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

14 Second Annual State Legislative Day On 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 Debbi at dadamkin@floridahemophilia.org to get involved. NEW PROGRAM! FHA is proud to announce a brand new program for teens and young adults ages JULY 31 AUGUST 2 Be on the lookout for more information! 14 WINTER 2015 LIFELINE

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17 NEW DATE! NEW LOCATION! THURSDAY, JULY 16 SUNDAY, JULY 19 HILTON PALM BEACH AIRPORT 150 Australian Ave, West Palm Beach, FL Look out for registration packets in the mail!

18 FRIDAY, JUNE 12 SATURDAY, JUNE 18 SPACE IS LIMITED! Please 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 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 dadamkin@floridahemophilia.org for the application packet.

19 FHA ResourceCenter MISSION STATEMENT 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 Phone: (727) Center for Children s Cancer and Blood Disorders at Arnold Palmer Hospital for Children 92 West Miller St., MP 318 Orlando, FL Phone: (321) Joe DiMaggio Children s Hospital Pediatric Specialty Center 1150 N. 35th Ave. Suite 520 Hollywood, FL Phone: (954) Lee Memorial Hospital Department of Pediatric Hematology & Oncology 9981 So. Healthpark Dr. Suite 156 Ft. Myers, FL Phone: (239) Do the 5 Nemours Children s Clinic, Jacksonville Department of Pediatric Hematology/Oncology 807 Children s Way Jacksonville, FL Phone: (904) (904) University of Florida Department of Medicine Adult Hemophilia P.O. Box Gainesville, FL Phone: (352) University of Florida Pediatric Hematology/ Oncology P.O. Box Gainesville, FL Phone: (352) divisions/hemonc/ Nemours Children s Clinic, Orlando Department of Pediatric Hematology/Oncology Nemours Parkway Orlando, FL Phone: (904) , (904) Sacred Heart Pediatric Hemophilia Program, Pensacola Phone: (850) St. Joseph s Children s Hospital Pediatric Hematology Oncology Out-patient Clinic 3001 W. Dr. Martin Luther King Jr. Blvd. Tampa, FL Phone: (813) or (813) The University of Miami Hemophilia Treatment Center Pediatric Clinic Location Alex s Place at Sylvester 1475 NW 12th Avenue Suite C103 Miami, FL Phone: (305) Adult Clinic Location ACCW-3A 1611 NW 12th Avenue Miami, FL Phone: (305) USF Adult Hemophilia Center Department of Internal Medicine Bruce B. Downs Boulevard, MDC 19 Tampa, FL Phone: (813) 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 CONTACT NUMBERS Florida Hemophilia Association Office (888) President Jon Salk Executive Director Debbi Adamkin (305) dadamkin@floridahemophilia.org National Hemophilia Foundation (800) Hemophilia Federation (800) LA Kelley Communications, Inc. Free resource material on Hemophilia (978) 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 Toll Free: (888) Newsletter Committee: Debbi Adamkin, Maria Rubin, Translation: Roxana Ambrosini, Roxanna Delgado Design and Production: Group M, Advertising & Design WINTER 2015 LIFELINE 19

20 Florida Hemophilia Association (Formerly known as Florida Chapter, NHF) 915 Middle River Drive, Suite 421 Ft. Lauderdale, FL If you would like to contribute to Community Corner, please submit your stories to Debbi at FHA is online! Visit for upcoming programs, event photos and more!