The Official Newsletter of the Florida Hemophilia Association

Summer 2017

Guy's Day OutLago Mar Country ClubOctober 7

Hispanic Heritage DayMiami Marriott Biscayne BayOctober 13

First TeeWeston Hills Country ClubNine-week program begins onOctober 14

Hispanic Heritage DayCuba Libre RestaurantOctober 28

Swing for the Kids GolfTournamentLago Mar Country ClubNovember 13

Women’s RetreatDecember 1-2

21st Annual Holiday DuoDecember 10

UPCOMING EVENTS

AND PROGRAMS

Executively SpeakingPage 2

Community CornerPage 4 - 7

NHF NewsPage 11-12, 14

FHA Resource CenterPage 15

INSIDE

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FamilyEducationS Y M P O S I U M

Highlights of the 34th Annual

26thAnnual Swing for the Kids Golf Tournament Monday, November 16, 2015 at the Lago Mar Country Club

The Annual Swing for the Kids Golf Tournament for Hemophil ia ra ises funds to support programs for peop le with bleeding disorders .

26th Annual Swing for the Kids Monday, November 16, 2015Lago Mar Country Club

one of the area ’s f inest pr ivate-member owned golf and country c lubs Golf Inc one of the top 10 in the country Come out and support the F lor ida Hemophil ia Assoc iat ion and en joy p lay ing on this beaut iful golf course

Registrat ion begins at 11 :00 a .m . . Shotgun start begins at 12 :00 p .m awards dinner with raff le and l ive/s i lent auc t ion at 5 :30 p .m .

he 34th Annual Family Education Symposium took place from August 3-6 at the beautifulEmbassy Suites West Palm Beach. The theme of this year’s symposium was The Many Faces

of FHA, which highlighted many of the people who volunteer with the organization.Medical providers, including physical therapists, social workers, and hematologists shared

their knowledge with patients and their family members about various topics, such as “LivingLonger and Stronger,” “VWD 101,” and “Insurance in a Time of Uncertainty.” Throughoutthe weekend, patients asked questions about their issues and concerns, and they shared theirexperiences, trials, and successes.

The children, teens, and young adults were busy with their own educational sessions andfun activities, which included art, swimming, interactive games, and a cooking class.

I want to express my dearest gratitude to all of our speakers and facilitators, who took thetime to come out and make this year’s symposium another great success. I’m thankful to thecommunity for coming to the symposium to stay up to date about everything regarding bleedingdisorders. I look forward to another great event next year!

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We had a very busy summer here at FHA, so I’dlike to use this opportunity to reflect on some of theprograms and activities that have taken place.Summer started with a Girls Day Out at PaintingWith a Twist, where the ladies showed off theirartistic chops. We hosted the 3rd annual Teen andYoung Adult Retreat, an educational luncheon, anda Parents Empowering Parents “PEP” program inSpanish. The highlight of the summer was the 34thAnnual Family Education Symposium, where over

350 people enjoyed a wonderful weekend filled with educational tracks,catching up with old friends, and lots of fun!

Be sure to read the newsletter in its entirety to find out more about someof these events. We also have more programs planned for fall, so be onthe lookout for emails from us so that you can participate!

Last, but certainly not least, FHA is working closely with all of our nationalorganizations to stay on top of the state of healthcare in Florida in thistime of uncertainty. During the past several months we have sent out“action alerts” asking you to engage with your lawmakers and let themknow what you need in healthcare reform. Your voices, and the voicesof millions of other grassroots advocates around the country, have madea huge difference in the healthcare debate. We still have more workahead of us, so please continue to help by taking action when needed!

See you soon!

Tuvimos un verano bastante ocupado aquí en la FHA, por lo que me gustaríaaprovechar esta oportunidad para reflexionar sobre algunos de losprogramas y actividades que se llevaron a cabo. El verano empezó con undía para las chicas pintar (Girls Day Out at Painting With a Twist), en el quelas damas demostraron sus aptitudes artísticas. Fuimos los anfitriones del 3.ºRetiro anual para adolescentes y jóvenes, un almuerzo educativo, y de unprograma en español de Padres capacitando a padres (Parents EmpoweringParents, “PEP”). El punto culminante del verano fue el 34.º Simposio anualpara la educación de la familia, en el que más de 350 personas disfrutaron deun maravilloso fin de semana repleto de temas educativos, y tuvieron laoportunidad de ponerse al día con viejas amistades y disfrutar un montón. No deje de leer el boletín informativo en su totalidad para saber más sobrealgunas de estas actividades. También tenemos planeados más programaspara el otoño; así es que esté al pendiente de los correos electrónicos que leenviamos, para que pueda participar. Por último, pero no menos importante, la FHA está colaborando estrechamentecon todas nuestras agrupaciones nacionales para dar seguimiento a lasituación de la atención médica en Florida durante estos tiempos deincertidumbre. Durante los últimos meses, hemos enviado “llamados a laacción” en los que les pedimos que se pongan en contacto con suslegisladores para dejarles saber lo que necesitan en lo que se refiere a lareforma sanitaria. Sus voces, y las voces de millones de otros defensorescomunitarios en todo el país, han hecho una gran diferencia en el debatesobre la atención médica. Todavía tenemos mucho trabajo por delante; asíes que, por favor, ¡siga ayudando y tome medidas cuando sea necesario! ¡Nos vemos pronto!

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ExecutivelySpeaking MensajeEjecutivo

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Debbi AdamkinFHA Executive Director

Debbi AdamkinDirectora Ejecutiva de FHA

continued... Highlights of the 34th Annual Family Education Symposium

I’m thankful to the community for coming to the symposium to stay up to date about everything

regarding bleeding disorders.

3SUMMER 2017 • LIFELINE

continued... Highlights of the 34th Annual Family Education Symposium

Thank You forSupporting the

34th Annual Family Education Symposium

Symposium Partner

Shire

Friends of FHA

Translation SponsorBioTek reMEDys

- Pfizer- Genentech- Bayer

- Octapharma- CSL Behring

Biotherapies for Life

Other Supporters

Symposium Committee

Accredo SpecialtyPharmacyAlnylamPharmaceuticalsAptevoTherapeuticsBioverativ

CVS SpecialtyPharmacy

Diplomat SpecialtyInfusion Group

Grifols

Novo Nordisk

Debbi AdamkinJeanette CestaJulie Cesta

Julie Doar-SinkfieldAlta JosephValerie Mooney

Volunteers

Elise BostonSherry BoylanSara CaseyJeanette CestaJulie CestaLuis CorderoKarina De la Mota-DiazJulie Doar-SinkfieldDouglas EstradaEdward KueblerRaymond LeeGenesis LopezEsther ManzanaresJean Marsan

Bobby MooneyMaggie MooneyValerie MooneyJohn NovoaMiriam PimentelSanta ReynosoAlida RiveraIvan RomeroMaria RubinWilliam RubinCarmen SinkfieldLynn SlackSteve Tejiram

4 SUMMER 2017 • LIFELINE

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n June 29-July 2nd, we gathered fourteen teens and young adults in beautiful BocaRaton for the 3rd annual Teen and Young Adult Retreat. We changed things up this

year by encouraging participants to bring a buddy to the retreat! It was a great opportunity forthem to teach a close friend or family member about their bleeding disorder.

This year, we created exciting educational sessions based on suggestions from the teens whoattended the second retreat. FHA Board Member John Novoa talked to them about moneymatters such as scholarships, investing, and planning for the future. The participants also got achance to practice telling their story during an exercise about advocacy.

Of course, we also made time for some fun!We caught a Marlins vs. Mets baseball game,courtesy of Ballpark Buddies, completed achallenge course, completed a scavenger hunt,and we showed off our singing chops duringkaraoke! We’re excited about the continuedgrowth of this program, and we’re lookingforward to the 4th retreat.

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6 SUMMER 2017 • LIFELINE

Miguel Lutin, age 9:Thank you for letting me have the opportunity to swim

with Tashi and Grace. I thought all the tricks were reallycool. Thank you to Eli for helping me with the dolphinsand showing me the cool tricks. Tashi and Grace areamazing and I had a lot of fun with them. They were socute! I also enjoyed the touch pool. There were somereally interesting animals in the tank. I really enjoyedmaking our own shirts too. Thank you for making thewhole day great!

Natalia Lutin, age 7Thank you for letting me swim with the dolphins. The

dolphin tricks were terrific. My favorite trick was racingwith Tashi and Grace. I really enjoyed swimming withthem. Dolphins are the cutest. I really liked the touch tankand making shirts. I hope you had a good day with us,because I had a wonderful day with you.

Sabrina Quinonez, age 6:Thank you for letting me swim

with the dolphins. I loved it, and thepeople are so nice. They rememberme when I come back. It makes meso happy. Thank you, FloridaHemophilia Association.

7SUMMER 2017 • LIFELINE

The Daniel L. Carlin Memorial Scholarship

Congratulations to the Daniel CarlinMemorial Scholarship Recipients

Who was Daniel L. Carlin?Daniel Carlin was a wonderful young man who will forever be a part of our bleeding disorders community in Florida. He wasa friendly, outgoing, and very thoughtful person with a big heart who never missed a birthday or anniversary of those mostspecial to him. Daniel had severe hemophilia A and unfortunately passed away in July 2000 at the age of 24 from complicationsof AIDS. Shortly after their son’s passing, Daniel’s parents Bob, a former member of FHA’s Board of Directors, and Bethcreated the scholarship program in his memory. FHA is proud to announce this year's award recipients.

Brooke Jones’ goals include attendinggraduate school and furthering hermathematics degree. She loves math! Shewould like to utilize her math skills topotentially be a statistician for a medicalfacility. This would assist physicians inproviding optimal health care.

Margaret “Maggie” Mooney graduatedfrom J.W. Mitchell High School with honors,and she plans to major in Education.Maggie was extremely active in herschool’s marching band, and she wants tobe a band director after she completes herstudies. Maggie was also a member of herschool’s National English Honor Society,Key Club, and Ecology Club.

Felix Marchena plans to major in Dentistry,and his goal is to become a dentist. He feelsthat his most important accomplishmentwill be when he and his brother, who hashemophilia, are heads of an organizationthat will help find a cure for hemophilia.Felix played varsity soccer for three years.

We are proud of theseleaders and wish them much

success and joy in theirfuture endeavors!

Congratulations, Maria! We are so proud of Maria Santaella,Nurse Coordinator at the University of Miami Hemophilia TreatmentCenter, for being awarded Nurse of the Year at NHF’s Annual Meeting.You certainly deserve this and more!

2017 Recipients

The Benefits of Comprehensive Care at aHemophilia Treatment CenterBy: Maya Bloomberg, MSN, ARNP, FNP-BC, University of MiamiHemophilia Treatment Center

omprehensive care carried out in a specializedHemophilia Treatment Center (HTC) is considered

optimum treatment for patients with bleeding disorders.National statistics have shown a decrease in mortality andhospitalization rates for bleeding complications in patientsreceiving care at an HTC when compared to an outsidehematologist. There are many additional benefits ofcomprehensive care, including less time missed from school orwork, decreased health care costs, and increased autonomy.

Comprehensive care is more than just treating your bleedingdisorder. It is utilizing a multidisciplinary team to provideeducation in treating and preventing problems in order for youto have the best quality of life. The multidisciplinary team mayinclude hematologists, hemophilia specialty nurses, socialworkers, physical therapists, research coordinators,orthopedists, dentists/oral surgeons, gynecologists and/orgeneticists.

Whether you live near or far, scheduling an annual visit withyour local HTC has many benefits. We have the time to havea detailed discussion about your current treatment andconcerns – what is working and if there are problems – and tomake sure you are receiving the proper dose of factor toprevent any complications. You can have an opportunity toparticipate in various research studies involving upcomingproducts, which otherwise would not be available or offeredwith an outside hematologist. Having joint issues? We have adedicated hemophilia physical therapist to provide a fullevaluation and ongoing management and have startedincorporating routine joint ultrasounds at our center. Havinginsurance challenges or psychosocial issues? We have a socialworker who can assist you. Whether it is adjusting to ahemophilia diagnosis, locating resources, or school/workdifficulties, these can be addressed during a comprehensivevisit. As part of the comprehensive care model, you wouldhave access to all of these services for no additional fee. Weunderstand that patients live all over, and we are happy tocoordinate with your local hematologist to make sure you arereceiving the best care, as long as an annual visit is maintainedat your local HTC.

Having an annual visit and receiving comprehensive careallows a patient to gain more control over their life, since youhave a dedicated team to teach you how to take charge of yourhealth. You will have better joints, have access to manyresources, decrease health care costs and avoid time spent inhospitals or doctor’s offices.

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There are seven federally-fundedHTCs in Florida.

1. Arnold Palmer Hospital for ChildrenThe Hayley Center for Children’s Cancerand Blood Disorders92 West Miller St., MP 318 – Orlando, FL 32806

2. Johns Hopkins All Children’s Outpatient Care ClinicPediatric Cancer and Blood Disorders Center601 5th Street South, Third Floor – St. Petersburg, FL 33701

3. Nemours Children’s Clinic, JacksonvilleDepartment of PediatricHematology/Oncology807 Children’s Way – Jacksonville, FL 32207

4. St. Joseph’s Children’s Hospital Center for Bleeding andClotting DisordersPediatric Hematology Oncology – Out-patient Clinic3001 W. Dr. Martin Luther King Jr. Blvd. – Tampa, FL 33607

5. University of FloridaHemophilia Treatment CenterDivision of Pediatric Hematology/Oncology1600 SW Archer Road – Gainesville, FL 32610

6. The University of Miami Hemophilia Treatment CenterDepartment of Pediatrics Div of Hematology/OncologyLocator Code D8201601 NW 12th Ave., Room 5019 – Miami, FL 33136

7. USF Adult Hemophilia CenterHematology, 4th Floor13220 Laurel Drive – Tampa, FL 33612

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Los beneficios de una atención integral en unCentro para el tratamiento de la hemofiliaPor: Maya Bloomberg, MSN, ARNP, FNP-BCCentro para el tratamiento de la hemofilia de la Universidad de Miami

a atención integral que se proporciona en un centro para eltratamiento de la hemofilia (HTC, por sus siglas en inglés)

especializado se considera el tratamiento óptimo para los pacientescon trastornos hemorrágicos. Las estadísticas nacionales hanmostrado una disminución en la mortalidad y las tasas dehospitalización por complicaciones de tipo hemorrágico enpacientes que recibieron atención médica en un HTC, encomparación con los que fueron tratados por un hematólogoindependiente. La atención integral tiene otros muchos beneficios,entre ellos menos tiempo perdido en los estudios o el trabajo,menores costos en la atención médica y una mayor autonomía.

La atención integral es más que solo tratar el trastornohemorrágico. Consiste en utilizar un equipo multidisciplinario parabrindar instrucción sobre cómo tratar y prevenir los problemas,para que usted pueda tener la mejor calidad de vida. Ese equipomultidisciplinario podría estar compuesto por hematólogos,personal de enfermería especializado en hemofilia, trabajadoressociales, fisioterapeutas, coordinadores de investigación, cirujanosortopédicos, dentistas y cirujanos maxilofacial, ginecólogos ygenetistas.

Ya sea que viva cerca o lejos, programar una visita anual a su HTClocal tiene muchas ventajas. Tenemos tiempo para conversardetalladamente con usted sobre su tratamiento actual y susinquietudes –qué está funcionando y si hay problemas– y paraasegurarnos de que esté recibiendo la dosis adecuada del factorpara prevenir complicaciones. Puede tener la oportunidad departicipar en diversos estudios clínicos relacionados con productosen desarrollo, los que de otra manera no estarían a su disposición ono se los podría ofrecer un hematólogo independiente. ¿Tieneproblemas con las articulaciones? Tenemos un fisioterapeutaespecializado en hemofilia que puede hacerle una evaluacióncompleta y terapia ininterrumpida, y hemos comenzado aincorporar ecografías articulares de manera habitual en nuestrocentro. ¿Tiene dificultades con el seguro o problemas psicosociales?Disponemos de una trabajadora social que puede ayudarle. Ya seaque necesite adaptarse al diagnóstico de hemofilia, localizarrecursos, o tiene problemas escolares o laborales, todo esto se puedeabordar durante una visita integral. Como parte del modelo deatención integral, usted tendría acceso a todos esos servicios sinningún costo adicional. Entendemos que los pacientes viven enmuchos lugares, y con mucho gusto podemos coordinar con suhematólogo para asegurar que reciba la mejor atención, siempre ycuando continúe acudiendo a una visita anual en su HTC local.

Acudir a una visita anual y recibir una atención integral le permiteal paciente tener mayor control sobre su vida, ya que tiene a sudisposición un equipo especializado para enseñarle cómo hacersecargo de su salud. Esto le permitirá tener articulaciones más sanas,tener acceso a muchos recursos, disminuir los costos de la atenciónmédica y evitar pasar tiempo en hospitales o consultorios.

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En Florida existen siete HTC quereciben financiamiento federal.

1. Arnold Palmer Hospital for ChildrenThe Hayley Center for Children’s Cancerand Blood Disorders92 West Miller St., MP 318 – Orlando, FL 32806

2. Johns Hopkins All Children’s Outpatient Care ClinicPediatric Cancer and Blood Disorders Center601 5th Street South, Third Floor – St. Petersburg, FL 33701

3. Nemours Children’s Clinic, JacksonvilleDepartment of PediatricHematology/Oncology807 Children’s Way – Jacksonville, FL 32207

4. St. Joseph’s Children’s Hospital Center for Bleeding andClotting DisordersPediatric Hematology Oncology – Out-patient Clinic3001 W. Dr. Martin Luther King Jr. Blvd. – Tampa, FL 33607

5. University of FloridaHemophilia Treatment CenterDivision of Pediatric Hematology/Oncology1600 SW Archer Road – Gainesville, FL 32610

6. The University of Miami Hemophilia Treatment CenterDepartment of Pediatrics Div of Hematology/OncologyLocator Code D8201601 NW 12th Ave., Room 5019 – Miami, FL 33136

7. USF Adult Hemophilia CenterHematology, 4th Floor13220 Laurel Drive – Tampa, FL 33612

Mark your calendars!8th Annual Walk in the JungleJungle Island / April 29, 2018

35th Annual Family Education SymposiumEmbassy Suites West Palm Beach

July 19-22, 2018

Sponsorship opportunities are available!

Please contact us if you would like to volunteer or participate on the committee for the Walk in the Jungle and/or the Family Education Symposium.

Contact us at 305-235-0717 or email Info@floridahemophilia.org

Save the Date

28thAnnual Swing for the Kids Golf TournamentMonday, November 13, 2017 at the Lago Mar Country Club

The 28th Annual Swing for the Kids takes place on Monday,November 13, 2017. Join us for a golf scramble at Lago Mar CountryClub to raise money to support the programs of the FloridaHemophilia Association: education, advocacy, financial assistance, andoutreach while playing on an “award winning golf course."The Lago Mar Country Club is located in Plantation, FL and is oneof the area’s finest private-member owned golf and country clubs andhas been recognized by Golf Inc as one of the top 10 in the country.

Come out and support the Florida Hemophilia Association and enjoyplaying on this beautiful golf course.Registration begins at 11:00 a.m. with lunch and preview of auction.Shotgun start begins at 12:00 p.m. and awards dinner with raffle andlive/silent auction at 5:30 p.m. Each participant receives range balls,golf shirt, lunch and dinner. Contests Include: Hole-in-One to win a vehicle, Longest Drive; Closest to thePin; Putting; Beat the Pro and Par 3 Poker where winner takes 50/50 split.

For additional information or to learn more about the Association and ways you can contribute, please call or email Debbi Adamkin at (305) 235-0717 or dadamkin@floridahemophilia.org.

Spark offers a glimpse of efficacy in first twohemophilia A gene therapy patients / By John Carroll

Spark ofrece un destello de eficacia en los dos primerospacientes con hemofilia A tratados con genoterapia / Por John Carroll

With its lead gene therapy under FDA review, SparkTherapeutics is now unveiling the first encouraging responses on

the hemophilia A front.

With analysts looking for a 12%-plus Factor VIII response, the companysays that investigators tracked an 11% and 14% stabilized rise in FactorVIII activity in the first two patients who were given the therapy in thedose-escalation study.

Key to this part of the process, researchers say they have seen no FactorVIII inhibitors appear, no thrombotic events, no spontaneous bleeds andno need to use corticosteroids on the patients, who have been tracked for23 and 12 weeks.

As a result, the biotech says that it has now doubled the dose and treatedthe third patient in the proof-of-concept study. States the company:“While the results for this third participant are early, his factor activitylevel is tracking proportionally higher, consistent with the doseescalation.”

Noted Jefferies’ Michael Yee recently: “First data from Phase I/II ofHemophilia A gene therapy SPK- 8011 in July/Aug could establish earlyproof-of-concept and be a (+) catalyst. Given small no. of pts to start, keyis demonstrating potential to get to 12%+ Factor VIII.”

Spark Therapeutics is the most advanced biotech in the US gene therapy

field, with a good chance to win the first ever FDA approval for a once-and-done treatment. As a result, analysts are watching every step CEOJeff Marrazzo makes. The biotech has been making steady progress witha gene therapy for hemophilia B after getting over some early safetyjitters. And just days ago Spark was handed a priority review of its leadprogram for RPE65-mediated inherited retinal disease, putting it first inline for a US approval.

Once over the finish line, gene therapies will present payers with a thornyissue. How do you cover therapies that have the promise of being usedjust once, without any guarantees that they can last a lifetime? Prices areexpected to be sky high, which has held back the two gene therapies thathave been approved in Europe, though only rarely used.

“The encouraging start of our SPK-8011 clinical trial reinforces thestrength of our gene therapy platform, delivers human proof-of-conceptin a second liver-mediated disease — a significant achievement in thegene therapy field — and positions us well to potentially transform thecurrent treatment approach for this life-altering disease with a one-timeintervention,” said Katherine High, president and chief scientific officerof Spark Therapeutics. “We are excited about the progress we aremaking to achieve our goals of our investigational hemophilia A and Bprograms: to safely achieve predictable, consistent and sustained activitylevels that prevent spontaneous bleeding.”

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ientras la FDA evalúa su principal genoterapia, SparkTherapeutics ahora da a conocer las primeras respuestas

alentadoras en el ámbito de la hemofilia A.

Con analistas que buscan una respuesta por encima del 12 % en el factorVIII, la empresa dice que los investigadores observaron una elevaciónestabilizada de un 11 % y un 14 % en la actividad del factor VIII en losprimeros dos pacientes a los que se les administró la terapia en el estudio conaumento escalonado de la dosis.

Como punto clave de esta parte del proceso, los investigadores indican queno han observado la aparición de inhibidores del factor VIII, casos detrombosis, hemorragias espontáneas ni la necesidad de administrarcorticoesteroides a los pacientes, a los que se ha dado seguimiento durante23 y 12 semanas.

Como consecuencia, la empresa biotecnológica dice que ahora haduplicado la dosis y administrado tratamiento al tercer paciente en el estudiopreliminar de eficacia. Según la empresa: “Aunque los resultados para estetercer participante son iniciales, su nivel de actividad del factor se hadeterminado como proporcionalmente más alto, lo que concuerda con elaumento de la dosis.”

Michael Yee de Jefferies señaló recientemente: “Los primeros datos dejulio/agosto del estudio SPK- 8011 de fase I/II con genoterapia para lahemofilia A pudieran establecer las pruebas preliminares de eficacia y ser uncatalizador positivo. Dada la reducida cantidad de pacientes, es clavedemostrar la posibilidad de lograr que el factor VIII esté por encima del 12 %.”

Spark Therapeutics es la empresa biotecnológica más a la vanguardia en el

campo de la genoterapia en los EE. UU. y es muy posible que obtenga laprimera aprobación que otorgue la FDA para un tratamiento “de una vezpor todas”. A consecuencia de esto, los analistas están al tanto de cada pasoque da el Director General Jeff Marrazzo. La empresa biotecnológica haestado haciendo avances firmes con una genoterapia para la hemofilia B,luego de sobrepasar algunas inquietudes iniciales sobre la seguridad. Y hacesolo unos pocos días, Spark recibió una evaluación prioritaria de su principalprograma para la enfermedad retiniana hereditaria mediada por laproteína RPE65, lo que lo coloca de primero en línea para recibir laaprobación en los EE. UU.

Una vez que atraviesen la meta, las genoterapias representarán un espinosoproblema para las empresas de seguros. ¿Cómo cubrir tratamientos quevienen con la promesa de que solo tienen que usarse una vez, sin ningunagarantía de que pueden durar toda la vida? Se prevé que los precios seránexorbitantes, lo que ha limitado a las dos genoterapias que han sidoaprobadas en Europa, las que se usan solo en raras ocasiones.

“El alentador comienzo de nuestro ensayo clínico SPK-8011 confirma lasolidez de nuestra plataforma de genoterapia, aporta pruebas preliminaresde eficacia en seres humanos en una segunda enfermedad en la queparticipa el hígado —un importante logro en el campo de la genoterapia—y nos coloca en una buena posición para tener la posibilidad de transformarel actual enfoque terapéutico para esta impactante enfermedad con una solaintervención”, expresó Katherine High, presidenta y directora científica deSpark Therapeutics. “Nos entusiasma el avance que estamos haciendo paralograr nuestros objetivos en los programas de investigación de la hemofiliaA y B: obtener, de manera segura, niveles de actividad previsibles, estables ysostenidos que eviten las hemorragias espontáneas.”

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14 SUMMER 2017 • LIFELINE

NHF • eNews 2017

CENTERS FOR BLEEDING DISORDERS*Hemophilia Treatment Center (HTC)

ABOUT THIS PUBLICATION

Florida Hemophilia

Association Office

(888) 880-8330

Executive Director

Debbi Adamkin(305) 235-0717dadamkin@floridahemophilia.org

National Hemophilia

Foundation

(800) 424-2634

Hemophilia Federation of America

(800) 230-9797

LA Kelley

Communications, Inc.

Free resource material onHemophilia(978) 352-7657

CONTACT NUMBERSMISSION STATEMENT

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

Johns Hopkins All Childen's

Outpatient Care Clinic

Pediatric Cancer andBlood Disorders Center601 5th Street South,Third FloorSt. Petersburg, FL 33701Phone: (727) 767-4931www.allkids.org*HTC

Center for Children’s

Cancer and Blood

Disorders at Arnold

Palmer Hospital

for Children

92 West Miller St., MP 318Orlando, FL 32806Phone: (321) 841-8588www.orlandohealth.com*HTC

Joe DiMaggio

Children’s Hospital

Pediatric Specialty Center1150 N. 35th Ave.Suite 520Hollywood, FL 33021Phone: (954) 986-2234

Lee Memorial Hospital

Department of PediatricHematology & Oncology9981 So. Healthpark Dr.Suite 156Ft. Myers, FL 33908Phone: (239) 332-1111

Nemours Children’s

Clinic, Jacksonville

Department of PediatricHematology/Oncology807 Children’s WayJacksonville, FL 32207Phone: (904) 697-3789(904) 697-3600www.nemours.com*HTC

Nicklaus Children’s

Hospital

Kidz Medical ServicesDivision ofHematology/Oncology3100 SW 62 AveSuite 121Miami, Florida 33155Phone: (305) 662-8360

University of Florida

Hemophilia Treatment CenterDivision of Pediatric Hematology/Oncology1600 SW Archer RoadGainesville, FL 32610Phone: (352) 273-9120www.peds.ufl.edu/divisions/hemonc/*HTC

Nemours Children’s

Clinic, Orlando

Department of PediatricHematology/Oncology13535 Nemours ParkwayOrlando, FL 32827Phone: (904) 697-3789,(904) 697-3600

Sacred Heart Pediatric

Hemophilia Program,PensacolaPhone: (850) 416-7712

St. Joseph’s Children’s

Hospital

Pediatric HematologyOncology Out-patientClinic3001 W. Dr. MartinLuther King Jr. Blvd.Tampa, FL 33607Phone: (813) 554-8294or (813) 321-6820*HTC

The University of Miami

Hemophilia Treatment

Center Pediatrics and Adults

University of Miami Miller

School of Medicine

Department of Pediatrics Div of Hematology/OncologyLocator Code D8201601 NW 12th Ave., Room 5019Miami, FL 33136Phone: (305) 243-0834www.htcextras.org*HTC

USF Adult Hemophilia

Center

Hematology 4th Floor13220 Laurel DriveTampa, FL 33612Phone: (813) 974-3725*HTC

LIFE LINE is the officialNewsletter of the FloridaHemophilia Association.It is produced quarterly anddistributed free of charge torequesting members of thebleeding disorder community.

Florida Hemophilia

Association Headquarters

915 Middle River Drive, Suite 421Ft. Lauderdale, FL 33304Toll Free: (888) 880-8330www.floridahemophilia.org

Translation:

Roxanna Delgado

Design and Production:

Group M, Advertising & Design305-235-2538

15SUMMER 2017 • LIFELINE

FHA ResourceCenterThe Florida Hemophilia Association, Inc (FHA) is a Not-for-Profit organization that isdedicated to enhancing the quality of life in the bleeding disorders community by creatingprograms and services that provide education, emotional support and advocacy. We arecontributing toward research to ultimately find a cure.

Florida Hemophilia Association(Formerly known as Florida Chapter, NHF)915 Middle River Drive, Suite 421Ft. Lauderdale, FL 33304