Lighten Up Program - Florida Hemophilia Association
Transcription
Lighten Up Program - Florida Hemophilia Association
The Official Newsletter of the Florida Hemophilia Association Lighten Up Program SUMMER 2013 INSIDE Executively Speaking Page 2 Community Corner Page 3 - 4 NHF News Page 7 - 8 FHA Resource Center Page 11 “SAVE THE DATE” 30th Annual Family Education Symposium September 6-8 Amigos Dinner-Miami September 15 NHF Annual Meeting October 3-5 Educational Program-Ft. Lauderdale October 22 Maintaining healthy eating habits and an active lifestyle is very important to bleeding disorder patients. 24th Annual Swing for the Kids Golf Tournament December 9 Dr. Joanna Davis Holiday Family Fun Day December 15 HFA Symposium March 27-29, 2014 4th Annual Walk in the Jungle May 3, 2014 eld on June 1, 2013 at the Art Institute of Fort Lauderdale, the Lighten Up program brought together community members for a fun afternoon of cooking, learning and best of all, eating! The day started off with a talk by Dr. Joanna Davis from the University of Miami HTC and Sheah Rarback, Director of Nutrition at the Miller School of Medicine. Sheah gave the H group great tips on healthy eating and how easy it can be to integrate healthier foods into daily life. Dr. Davis then discussed why maintaining healthy eating habits and an active lifestyle is very important to bleeding disorder patients. Carrying extra weight can place a heavy strain and cause damage to joints when a patient has a bleed. Continue Pg. 2 1 ExecutivelySpeaking MensajeEjecutivo It’s been a busy time for us here at the Florida Hemophilia Association especially with the planning of our 30th Annual Family Education Symposium scheduled for September 6 - 8 at the Embassy Suites in WPB. We’ve got a terrific line-up of fun, education and networking opportunities for the entire family that’s surely not too be missed. We also just hosted the last of our three scheduled “Swim with Dolphins” outings in Key Largo. Participants learned about marine life and even got to see and hold some very rare creatures like the endangered “Queen Conch” and sea urchins. You can see the photos of the dolphin day and all of FHA outings in the Photo Gallery on our webpage. Hemos estado muy ocupados en la Asociación de Hemofilia de Florida, especialmente en la planificación de nuestro 30er. Symposium Anual de Educación a la Familia , a llevarse a cabo del 6 al 8 de setiembre en el Embassy Suites de WPB. Tendremos gran variedad de cosas divertidas por hacer, así como también actividades educativas y grupales para toda la familia que estamos seguros no se perderán. También acabamos de auspiciar la última de las tres actividades programadas “Swim with Dolphins” (Nadando con los Delfines) en Key Largo. Los participantes aprendieron sobre la vida marina y hasta pudieron ver y tocar algunas especies en peligro de extinción como la “Queen Conch” (Concha Reina) y erizos de mar. Pueden ver las fotos de la actividad del día de los delfines y de otras actividades de la FHA en la Galería de Fotos de nuestra página web. We’ve got a myriad of things up our sleeves for you in the coming months! You’ll want to make sure to open all of the emails from us and also check out our website at www.floridahemophilia.org for new programming, upcoming educational dinners, holiday fun, fund-raising events and a whole lot more! And finally a special request to all of you to help out your chapter (FHA) by volunteering, fund-raising and or joining one of our committees. With your help we can continue to provide some great programs and outings for all of you to enjoy. Tenemos infinidad de cosas que ofrecerles en los próximos meses! Asegúrense de abrir todos los emails que les enviamos y también chequear nuestro website www.floridahemophilia.org para estar al tanto de la nueva programación, de las próximas cenas educativas, de las diversiones programadas para los feriados (holidays), de los eventos para recaudar fondos y muchísimo más! Para concluir, quisiera pedirles a todos ustedes un favor especial: que apoyen a su capítulo (FHA) ya sea como voluntarios, en la recaudación de fondos y/o formando parte de uno de nuestros comités. Con su ayuda podremos seguir brindándoles los excelentes programas y actividades especialmente diseñados para el deleite de todos y cada uno de ustedes. I look forward to seeing you soon! Ansiando verlos muy pronto! Debbi Adamkin FHA Executive Director Debbi Adamkin Directora Ejecutiva de FHA Lighten Up Program Continued ... After the discussion, the group made their way into the kitchen to cook with culinary instructors and students. The recipes prepared were submitted prior to the event to be “lightened up” by the chefs. Some of the dishes prepared included: oven-fried chicken, macaroni-and-cheese, mofongo, braised collard greens and pecan pie. We would also like to thank the culinary instructors and students of the Art Institute of Fort Lauderdale for their time and teaching us how to cook a delicious and light meal! This program was made possible through a grant from the Hemophilia Alliance Foundation. We’d also like to acknowledge Grifols for being a Program Sponsor. 2 SUMMER 2013 • LIFELINE Mother's Educational Focus Luncheon Submitted by Amy Hook On May 18, 2013, my mother and I attended the Mother’s Educational Focus Luncheon at Brio Tuscan Grille in Gulfstream Park. I just wanted to let you know how much my mother and I appreciated the luncheon. It was the second time we attended. The other mothers that were there were really nice. The atmosphere was so laid back and relaxing. We all shared our stories and I truly felt we were able to connect with each other. Although I would never wish hemophilia on anyone, it was so comforting to know that we are not alone. When I told my husband what an enlightening experience I had, he got jealous. He wants to know when the Father’s Luncheon will be! I look forward to next year’s luncheon. This program was made possible through grants provided by: Baxter, Bayer and Kedrion Biopharma SUMMER 2013 • LIFELINE 3 SWIMMING WITH THE DOLPHINS Submitted by O mar Submitted by Ayden I had an amazing time at dolphin camp this year. This was my third year going to Island Dolphin Care. irt had a This year was very special because Squ born in August of was baby dolphin. His name is Tashi and he with Squirt and swim to last year. I was lucky enough to be able old and he can year a than baby Tashi. Tashi is amazing he is less has so many IDC ). d moo already do all kinds of tricks (if he’s in the tank named h touc the in al cool things to see. They had a new anim h is a whic hare sea a d Squishy. He is a very weird animal calle to kiss ce chan a had also I ! type of mollusk. He was very squishy! a had I e. som awe was the sea cucumber for good luck. The food was day the of part rite favo cheeseburger and it was delicious. My hins. It was so much fun. being able to go swimming with the dolp with Squirt and Tashi. The It made me so happy to be able to swim Squirt. I had so much fun best part was when I got to kiss and hug and Island Dolphin Care. at dolphin camp this year. Thank you FHA "I had a very grea t experience in 2nd. This was th Key Largo on Fr e first time I sw iday, August am with dolphins three dolphins na . I swam with med BB, Figi, an d Ding . At first nervous but the , I was a bit instructors kept te lling me that the very friendly an dolphins were d that I was goin g to have the be My instructors st experience. were extremely nice in guiding how not to plac me on how to an e my hands on d each dolphin. Th e best part was when I was up and close and kissed the do lphin. It was great to le arn about facts abou t fish and dolphins which are mammals. I actu ally kissed the sea cucumbe r , 7 years of good luck. M uah!!!! Lol I also enjoyed painting on my shirt and enjoyi ng my day with my mom and cousin s. Thanks FHA." Submitted by Genesis ifer Submitted by Jenn others with r and I have two br My name is Jennife through on a daily what my brothers go ficult it is for hemophilia. Seeing n’t imagine how dif ca I . me to ing pir life. They’re basis is very ins ilia take over their ph mo he let n’t do Debbi and them. But they careful. Thanks to be to ve ha d an ks aware of the ris n to experience so mily and I have gotte . It was an all her friends, my fa ming with dolphins im sw e lik s ing th l We got to swim many wonderfu unforgettable day! It was beyond with Bella and Bob. ! Every time amazing for all of us Education we go to the Family a lot about rn lea Symposium, we fun at the hemophilia and have u to everyone same time. Thank yo possible. who has made this On July 12th, I visited for the very first time Island Dolphin Care in Key Largo. The Island Dolphin care staff was so caring, friendly and patient towards us. Kim told us about a lot of invertebrates like the sea urchins, star fish etc. The food was great. After we ate, Eli taught us about the dolphins and then we swam with them! This experience was just amazing. The dolphins were so friendly and I felt like I was in the dolphin show at Seaworld! It was just awesome and I want to thank the FL Hemophilia Association and Island Dolphin Care for allowing me to experience this. Submitted by Sharella Flowers Island Dolphin Care. They enjoyed The kids had a wonderful experience at vertebrate and invertebrate animals that the touch tank and learning about the d begin able to interact with the live in the ocean. The kids especially love day they asked if they could come back dolphins in the water. At the end of the in we have the opportunity to participate tomorrow and do it all again. We hope this adventure again in the future. 4 SUMMER 2013 • LIFELINE This program was made possible through grants provided by: Bayer and Grifols. To view more pictures of “Swimming with the Dolphins”, visit us at www.floridahemophilia.org SUMMER 2013 • LIFELINE 5 NHF News • August 2013 Preparing Your Daughter for Her First Period By Leslie Quander Wooldridge M ichigan attorney Mindy Buurma, 36, is the mother of four hildren under age 10. She has type III von Willebrand disease (VWD), and her two daughters (ages 5 and 3) have type I. She plans to tell her daughters about menstruation when they are 8 or 9. “I want to make sure the information is coming from us and the doctors rather than from school or other children,” she says. Buurma has the right approach, say experts. Although girls can start their periods at 8 years old, the American College of Obstetricians and Gynecology (ACOG) says 90% experience their first period, or menarche, between 12 and 14. For young women with bleeding disorders, their menstrual flows can be especially heavy, long and painful, a condition called menorrhagia. Typically, their periods continue longer than seven days—the top range of what is considered normal. Impending menstruation can cause nervousness in young women. Girls and teens worry the blood will leak, staining their clothes, says Danna Merritt, MSW, LMSW, a social worker at the hemophilia treatment center at the Children’s Hospital of Michigan in Detroit. That’s why it’s important to prepare young women early on. They need to know what to expect and what to do if they later have a heavy flow, severe cramps or other complications. Starting the Discussion Mothers should have ongoing discussions about puberty and bodily changes with their daughters. They should avoid one long talk, says Lisa Perriera, MD, MPH, assistant professor of obstetrics and gynecology at University Hospitals in Cleveland, who treats young women with bleeding disorders. Experts suggest having the talk when your daughter is 8–12 years old. The initial discussion should cover what menstruation is, what happens in the body, what products to use and how to handle cramps, moods and fatigue. Chances are your daughter may already have had a previous discussion in her physical education or health class at school. And some tampon and pad manufacturers sell first-period kits for mothers to use when they “have the talk” with their daughters. Parents should answer all questions truthfully, says Perriera. Because young women can be shy or embarrassed to talk about their bodies around their parents, they should be encouraged to talk to their gynecologist or primary care physician privately. Merritt notes that doctors, nurses and social workers at your hemophilia treatment center also can talk to girls about menstruation and guide parents on what to say at home. Complications and Treatments Unlike Buurma’s older sisters, who have type I VWD—the most common and the mildest type—she has the most severe type. “We all knew that it would be a problem when I started menstruating,” she says. “I bled for about two months straight and was hospitalized for about three and a half weeks.” Knowing what’s normal or out of the ordinary is important for a young woman with a bleeding disorder during her first few menstrual cycles. “It’s not normal to be soaking a pad in an hour,” Perriera says. Other complications that require a physician’s attention include severe cramps that interfere with school or activities, and bleeding between periods. To reduce heavy bleeding, hormonal medications may be needed. But hormonal medications are also prescribed as birth control for sexually active women, which can sometimes present religious, cultural and other concerns for parents. When she was younger, Buurma’s doctors prescribed “the pill” as continuous hormonal medication to relieve her symptoms. “We are Catholic. In our religion, birth control is not an acceptable practice,” she explains. But her parents made it clear that taking the pills wasn’t against church doctrine because she was not using them to prevent pregnancy. Other hormonal options include certain intrauterine devices (IUDs) or hormonal implants. “I wish hormonal medicines weren’t marketed as birth control. They are period control. They are bleeding control,” says Perriera. Still, she realizes some parents have concerns and may request nonhormonal treatments first. That’s when hematologists can help. Because each girl with a bleeding disorder experiences a different degree of severity with menstrual bleeding, it may be wise to meet with her hematologist to discuss treatments. “For example, women with von Willebrand disease can be prescribed a hormone called DDAVP in the form of a nasal spray during menses to decrease the flow of bleeding,” says Sanjay Ahuja, MD, MS, a pediatric hematologist and oncologist who works with Perriera. “Women with type III von Willebrand disease may need von Willebrand factor replacement during menses.” Further, physicians will also combine hormonal and nonhormonal medications in patients with severe bleeding, he says. No young woman should suffer in silence. “I think the messages ‘you’re going to be OK’ and ‘we will deal with any issues together’ are huge,” Merritt adds. Source: HemAware-April 2013 Cómo preparar a su hija para su primera menstruación By Leslie Quander Wooldridge Mindy Buurma, abogada de 36 años de Michigan, es la madre de cuatro niños menores de 10 años. Ella padece de la enfermedad de von Willebrand (VWD) de tipo III y sus dos hijas (de 5 y 3 años de edad) padecen del tipo I. Ella piensa explicarles a sus hijas lo que es la menstruación cuando tengan alrededor de 8 o 9 años. “Quiero asegurarme de que reciban la información de nosotros y de los médicos en lugar de hacerlo en la escuela o de parte de otros niños”, dice ella. La Sra. Buurma lo está enfocando de la manera correcta, dicen los expertos. Aunque las niñas pueden empezar con sus menstruaciones a los 8 años de edad, el Colegio Estadounidense de Obstetricia y Ginecología (ACOG, por sus siglas en inglés) indica que el 90% de ellas tiene su primera menstruación, o menarquia, entre los 12 y los 14 años. Para las jovencitas que padecen de trastornos hemorrágicos, sus flujos menstruales pueden ser especialmente abundantes, prolongados y dolorosos, lo que se conoce como menorragia. Típicamente, sus menstruaciones duran más de siete días, que es el límite superior de lo que se considera normal. La inminente llegada de la menstruación puede producir nerviosismo en las jóvenes. Las niñas y las adolescentes se preocupan de que la sangre se vaya a pasar y les manche la ropa, comenta Danna Merritt, MSW, LMSW, una trabajadora social del centro para el tratamiento de la hemofilia en el Hospital Infantil de Michigan en Detroit. Por eso es importante preparar a las jóvenes con tiempo. Ellas necesitan saber qué esperar y qué hacer si más adelante tienen un flujo abundante, cólicos intensos u otras complicaciones. M Cómo empezar la conversación Las madres deberían conversar frecuentemente con sus hijas acerca de la pubertad y de los cambios corporales. Deberían evitar una sola conversación prolongada, dice la Dra. Lisa Perriera, MPH, profesora agregada de obstetricia y ginecología en University Hospitals en Cleveland, quien trata a jóvenes con trastornos hemorrágicos. Los expertos sugieren hablar con su hija cuando tenga entre 8 y 12 años de edad. La conversación inicial debe tratar sobre lo qué es la menstruación, qué ocurre en el organismo, qué productos usar y cómo manejar los cólicos, los cambios de humor y la fatiga. Lo más posible es que ya su hija haya hablado anteriormente sobre esto en la clase de educación física o de salud en la escuela. Algunos fabricantes de tampones y toallas sanitarias venden kits para la primera menstruación para que las madres los usen cuando tengan “esa conversación” con sus hijas. Los padres deben contestar todas las preguntas con sinceridad, dice la Dra. Perriera. Se debe animar a las jovencitas a hablar en privado con su ginecólogo o médico de cabecera ya que pueden tener timidez o sentir vergüenza de hablar sobre sus cuerpos en frente de sus padres. La Sra. Merritt indica que los médicos, enfermeras y trabajadores sociales en su centro para el tratamiento de la hemofilia también pueden hablar con las niñas sobre la menstruación y orientar a los padres sobre lo que tienen que decir en casa. Complicaciones y tratamientos A diferencia de las hermanas mayores de la Sra. Buurma, quienes padecen del tipo I de la VWD (el tipo más frecuente y leve), ella padece el tipo más SUMMER 2013 • LIFELINE 7 NHF News • August 2013 grave. “Todos sabíamos que iba a ser un problema cuando yo comenzara a menstruar”, dice ella. “Sangré durante casi dos meses seguidos y estuve hospitalizada por alrededor de tres semanas y medias”. Es importante que una joven que padece de un trastorno hemorrágico sepa lo que es normal y lo que no durante sus primeros ciclos menstruales. “No es normal empapar completamente una toalla sanitaria en una hora”, dice la Dra. Perriera. Entre las otras complicaciones que requieren atención médica se encuentran los cólicos intensos que interfieren con la escuela o las actividades, y el sangrado entre una menstruación y otra. Para disminuir el sangrado abundante, es posible que se necesite tratamiento hormonal. Pero los medicamentos para tratamiento hormonal también se indican como métodos de anticoncepción para las mujeres sexualmente activas, lo que algunas veces puede representar una inquietud de tipo religioso, cultural o de otro tipo para los padres. Cuando era más joven, los médicos de la Sra. Buurma le recetaron “la píldora” como medicamento hormonal continuo para aliviar sus síntomas. “Nosotros somos católicos. En nuestra religión, el uso de anticonceptivos no es aceptable”, explica ella. Pero sus padres le aclararon que tomar la píldora no estaba en contra de la doctrina de la iglesia ya que ella no la estaba usando para evitar un embarazo. Otras opciones hormonales incluyen ciertos dispositivos intrauterinos (DIU) o los implantes hormonales. Experimental Hemophilia B Gene Therapy Tricks the Immune System I n July, researchers at The Children’s Hospital of Philadelphia (CHOP) published the results of a study in which they used bioengineered decoys as a ruse to foil the immune system. This allowed for the successful delivery of gene therapy in mice with hemophilia B, or FIX deficiency. The lead author of the study was Katherine High, MD, director of CHOP’s Center for Cellular and Molecular Therapeutics. High and her team used capsids, the protein shell that encapsulates a virus, as the decoy. They also used adeno-associated viruses (AAVs) as delivery vehicles, or vectors, to carry the actual genetic material that triggers the production of factor IX. AAVs have recently become the “vector of choice” for researchers because they can deliver the genetic material into living cells to sustain therapeutic effect without causing disease. In addition, they can be targeted to liver cells, which manufacture FIX. However, one drawback in using injected AAVs is the body’s natural immune response. In some cases, antibodies are released, neutralizing the AAVs. To remedy that, investigators injected both empty capsids and genetically altered AAVs into the mice. The empty capsids effectively drew antibodies to them and away from the gene therapy. “This decoy strategy could be individualized to patients and could greatly expand the population of patients who may benefit from gene therapy,” said High. “Right now, 30 to 60 percent of adult patients develop antibodies that block the ability of an intravenously infused vector to reach the target cells in the liver. This approach holds the promise of overcoming this roadblock--pre-existing antibodies--and allowing successful intravenous gene therapy in virtually all adult patients.” This technique also proved effective in follow-up studies performed in rhesus macaque monkeys. The therapy initiated higher levels of factor IX production, with no adverse events reported. Although additional studies, including clinical trials in humans, will be necessary before such a therapy becomes a reality, the authors are encouraged by these preliminary findings. “Our results, which held up over a range of doses, suggest that in clinical studies, it will be feasible to adjust the ratio of empty capsids to gene vector doses, depending on an individual's pre-existing level of neutralizing antibodies. That means we could personalize gene therapy to make it more efficient for each patient,” concluded High. “This work should make it possible to bring effective gene therapy to most adults with severe hemophilia B. Each patient would receive a personalized final formulation that contains just the right amount of empty capsid to neutralize any pre-existing antibody, and allow the gene-expressing vector to reach the liver.” The study, “Overcoming Pre-existing Humoral Immunity to AAV Using Capsid Decoys,” was published in the July 2013 online issue of Science Translational Medicine. Source: ScienceDaily, July 17, 2013 8 SUMMER 2013 • LIFELINE “Desearía que los tratamientos hormonales no se comercializaran como anticonceptivos. Son para controlar la menstruación. Son para controlar el sangrado”, dice la Dra. Perriera. Sin embargo, ella reconoce que algunos padres tienen ciertas preocupaciones y pueden solicitar que se usen primero tratamientos no hormonales. Ahí es cuando los hematólogos pueden ayudar. Puede ser una buena idea visitar al hematólogo para considerar los tratamientos, ya que cada niña que padece de un trastorno de sangrado presenta un grado diferente de intensidad con el sangrado menstrual. “Por ejemplo, a las mujeres con la enfermedad de von Willebrand les pueden recetar una hormona llamada DDAVP que viene en forma de un spray nasal para usar durante las menstruaciones para disminuir el flujo del sangrado”, dice el Dr. Sanjay Ahuja, MS, un pediatra hematólogo y oncólogo que trabaja con la Dra. Perriera. “Es posible que las mujeres con la enfermedad de von Willebrand de tipo III necesiten remplazo del factor durante las menstruaciones”. Además, en las pacientes con sangrado fuerte, los médicos también combinarán medicamentos hormonales y no hormonales, expresa él. Ninguna jovencita debería sufrir en silencio. “Creo que los mensajes de ‘vas a estar bien’ y ‘solucionaremos cualquier problema juntas’ son muy importantes”, agrega la Sra. Merritt. Terapia génica experimental para la hemofilia B “engaña al sistema inmunitario E n julio, los investigadores del The Children’s Hospital of Philadelphia (CHOP) publicaron los resultados de un estudio en el que usaron señuelos creados mediante bioingeniería como una treta para desconcertar al sistema inmunitario. Esto permitió la distribución exitosa de la terapia génica en ratones con hemofilia B o con deficiencia del factor IX. El autor principal del estudio fue la Dra. Katherine High, directora del Centro para Tratamientos Celulares y Moleculares del CHOP. La Dra. High y su equipo utilizaron cápsides (la envoltura proteica que encapsula a un virus) como señuelo. También usaron virus adenoasociados (AAV, por sus siglas en inglés) como vehículos transportadores, o vectores, para llevar el material genético que desencadena la producción de factor IX. Los AAV se han convertido recientemente en el “vector de preferencia” para los investigadores ya que estos pueden llevar el material genético dentro de las células vivas para mantener el efecto terapéutico sin producir enfermedad. Además, es posible dirigir a estos virus para que tengan como objetivo las células hepáticas, las cuales producen el factor IX. No obstante, un inconveniente al usar AAV inyectados es la respuesta inmunitaria natural del organismo. En algunos casos, se liberan anticuerpos que neutralizan los AAV. Para remediar esto, los investigadores les inyectaron a los ratones tanto cápsides vacías como AAV alterados genéticamente. Las cápsides vacías atrajeron hacia ellas, de manera eficaz, los anticuerpos, alejándolos así de la terapia génica. “Esta estrategia con señuelos podría individualizarse para cada paciente y podría aumentar en gran manera la población de pacientes que pueden beneficiarse de la terapia génica”, dijo la Dra. High. “En la actualidad, del 30% al 60% de los pacientes adultos producen anticuerpos que bloquean la capacidad de un vector que se infunde por vía intravenosa de alcanzar las células que se tienen como objetivo en el hígado. Este enfoque promete superar este obstáculo (los anticuerpos preexistentes) y permitir una terapia génica intravenosa exitosa en prácticamente todos los pacientes adultos”. Esta técnica también demostró ser eficaz en los estudios de seguimiento realizados en monos macacos de la India. La terapia puso en marcha un aumento en la producción del factor IX, sin que se comunicaran eventos adversos. Aunque serán necesarios otros estudios, entre ellos ensayos clínicos en seres humanos, antes de que dicha terapia sea una realidad, los autores se encuentran alentados por estos hallazgos preliminares. “Nuestros resultados, los que se mantuvieron con diferentes dosis, permiten suponer que en los estudios clínicos será factible ajustar la proporción de cápsides vacías a dosis de los vectores de genes, en función de la concentración preexistente de anticuerpos neutralizantes en una persona. Eso significa que podríamos personalizar la terapia génica para hacerla más eficaz para cada paciente”, concluyó la Dra. High. “Este trabajo debería hacer posible que se pueda ofrecer una terapia génica eficaz a la mayoría de los adultos que padecen de hemofilia B grave. Cada paciente recibiría una formulación final personalizada que contenga solo la cantidad apropiada de cápsides vacías para neutralizar cualquier anticuerpo preexistente, y que permita que el vector que expresa el gen llegue al hígado”. El estudio, “Overcoming Pre-existing Humoral Immunity to AAV Using Capsid Decoys” (Vencer la inmunidad humoral preexistente contra los AAV mediante el uso de cápsides “señuelos”), se publicó en la edición en línea de Science Translational Medicine de julio de 2013. Fuente: ScienceDaily, 17 de julio de 2013 SUMMER 2013 • LIFELINE 9 FHA ResourceCenter MISSION STATEMENT CONTACT NUMBERS The Florida Hemophilia Association, Inc (FHA) is a Not-for-Profit organization that is dedicated to enhancing the quality of life in the bleeding disorders community by creating programs and services that provide education, emotional support and advocacy. We are contributing toward research to ultimately find a cure. HEMOPHILIA CLINICS All Children’s Outpatient Care Clinic Pediatric Cancer and Blood Disorders Center 601 5th Street South, Third Floor St. Petersburg, FL 33701 Phone: (727) 767-4931 www.allkids.org Center for Children’s Cancer and Blood Disorders at Arnold Palmer Hospital for Children 92 West Miller St., MP 318 Orlando, FL 32806 Phone: (321) 841-8588 www.orlandohealth.com Joe DiMaggio Children’s Hospital Pediatric Specialty Center 1150 N. 35th Ave. Suite 520 Hollywood, FL 33021 Phone: (954) 986-2234 Lee Memorial Hospital Department of Pediatric Hematology & Oncology 9981 So. Healthpark Dr. Suite 156 Ft. Myers, FL 33908 Phone: (239) 332-1111 Nemours Children’s Clinic, Jacksonville Department of Pediatric Hematology/Oncology 807 Children’s Way Jacksonville, FL 32207 Phone: (904) 697-3789 (904) 697-3600 www.nemours.com University of Florida Department of Medicine Adult Hemophilia P.O. Box 100277 Gainesville, FL 32610 Phone: (352) 265-0725 University of Florida Pediatric Hematology/ Oncology P.O. Box 100296 Gainesville, FL 32610 Phone: (352) 273-9120 www.peds.ufl.edu/ divisions/hemonc/ Nemours Children’s Clinic, Orlando Department of Pediatric Hematology/Oncology 13535 Nemours Parkway Orlando, FL 32827 Phone: (904) 697-3789, (904) 697-3600 Sacred Heart Pediatric Hemophilia Program, Pensacola Phone: (850) 416-7712 St. Joseph’s Children’s Hospital Pediatric Hematology Oncology Out-patient Clinic 3001 W. Dr. Martin Luther King Jr. Blvd. Tampa, FL 33607 Phone: (813) 554-8294 or (813) 321-6820 The University of Miami Hemophilia Treatment Center Pediatric Clinic Location Alex’s Place at Sylvester 1475 NW 12th Avenue Suite C103 Miami, FL 33136 Phone: (305) 689-7210 Adult Clinic Location ACCW-3A 1611 NW 12th Avenue Miami, FL 33136 Phone: (305) 243-6925 www.htcextras.org USF Adult Hemophilia Center Department of Internal Medicine 12901 Bruce B. Downs Boulevard, MDC 19 Tampa, FL 33612 Phone: (813) 974-1325 Do the 5 1 Get an annual comprehensive check-up at a hemophilia treatment center. 2 Get vaccinated – Hepatitis A and B are preventable. 3 Treat bleeds early and adequately. 4 Exercise to protect your joints. 5 Get tested regularly for blood-borne infections Florida Hemophilia Association Office (888) 880-8330 President Jon Salk Executive Director Debbi Adamkin (305) 235-0717 [email protected] National Hemophilia Foundation (800) 424-2634 Hemophilia Federation (800) 230-9797 LA Kelley Communications, Inc. Free resource material on Hemophilia (978) 352-7657 ABOUT THIS PUBLICATION LIFE LINE is the official Newsletter of the Florida Hemophilia Association. It is produced quarterly and distributed free of charge to requesting members of the bleeding disorder community. Florida Hemophilia Association Headquarters 915 Middle River Drive, Suite 421 Ft. Lauderdale, FL 33304 Toll Free: (888) 880-8330 www.floridahemophilia.org Newsletter Committee: Debbi Adamkin, Maria Rubin, Denise Schacher, Linda Thomas Design and Production: Group M, Advertising & Design 305-235-2538 SUMMER 2013 • LIFELINE 11 Florida Hemophilia Association (Formerly known as Florida Chapter, NHF) 915 Middle River Drive, Suite 421 Ft. Lauderdale, FL 33304 SAVE THE DATE • SAVE THE DATE • SAVE THE DATE • SAVE THE DATE • SAVE THE DATE • SAVE THE DATE Monday, December 9, 2013 Lago Mar Country Club 500 NW 127th Avenue, Plantation, FL 33325 Golf Tournament Consider joining a committee! We need help with: Auction and Raffle Items, Golfers and Volunteers. Please email [email protected] if you interested in helping us out!