The Official Newsletter of the Florida Hemophilia Association

WINTER 2012

“SAVE THE DATE”

HFA Annual MeetingMarch 30 – 31

2nd Annual Walk in the JungleApril 28

8th Annual Volley for a CureMay 2

Womens vWD RetreatJune 8-9

29th Annual Family EducationSymposiumJuly 27 – 29

INSIDE

Executively SpeakingPage 2

How to Register for2nd Annual Walk in The JunglePage 3

Community Corner,15th Annual Holiday DuoPage 4

FDA Approves HIV Vaccinefor Human TrialPage 5

Donor Sponsors to FHAPage 6-7

Investigators Publish TwoStudies Using UDC DataPage 8-9

FHA Resource CenterPage 11

1WINTER 2012 • LIFELINE

Saturday, April 28th at 7:30amJungle Island

1111 Parrot Jungle Trail Miami, FLDistance: 2K/4K (1.2/2.4 miles)

How can you make a difference?Help raise funds.

Help raise awareness.Walk with us.

Every Step Makes a Difference!

JOIN US FOR OUR 2ND ANNUAL WALK IN THE JUNGLE

Register Today to Walk in The Jungle!

It’s Easy!

See page 3 for registration instructions.

ExecutivelySpeakingThe 2nd Annual Walk in the Jungle

will take place on April 28, 2012. That’sjust 6 weeks away! This is one of ourbiggest fund-raisers of the year and weneed your support and participation toreach this year’s goal of $75,000! This isa great event for the whole family thatwill not only help create moreawareness of bleeding disorders to thecommunity, but will raise money for

programs and services for FHA. On February 18, we created someWALK excitement by having the walk kick-off “happy hour” at theMartini Bar at Gulfstream Park. Over 60 people attended to showsupport to FHA and to learn how they could participate in the 2012walk. Don’t fret if you’ve missed the meeting. We will walk youthrough the process!

Please go to www.floridahemophilia.org for newsand upcoming events.

See you at the Jungle!

La Segunda Caminata Inaugural de Hemofilia del 2012, serealizará el 28 de Abril del 2012. Necesitamos que todos acudany participen en la caminata. Este es un gran evento para toda lafamilia, no solamente ayudará a crear más conciencia de lostrastornos hemorrágicos en la comunidad, sino que recaudaráfondos para los programas y servicios de la FHA.

El 18 de Febrero creamos cierto entusiasmo por laCaminata, con una “happy hour” en el Martini Bar enGulfstream Park. Más de sesenta personas asistieron a lareunión para mostrar su apoyo a la FHA y para enterarse decómo pueden participar en la caminata del 2012. No sepreocupe si no pudo asistir a la reunión. ¡Le ayudaremos acaminar a través de todo el proceso!

Visita el sitio web ww.floridahemophilia.orgdonde se publicarán los próximos eventos.

Nos veremos en la Jungla!

MensajeEjecutivo

Debbi AdamkinFHA Executive Director

2 WINTER 2012 • LIFELINE

Debbi AdamkinDirectora Ejecutiva de FHA

Look for registration forms

in the mail and on

www.floridahemophilia.org

in April

29th Annual Family Education Symposium

July 27 – 29Embassy Suites Boca Raton

HIGHLIGHT SESSIONS

Pulse on the Road – Laurie Kelley

Dental Session – Dr. Jack Thomas

Clinical Trials and What’s up the Pipeline– Dr. Glenn Pierce

Special Keynote Speaker – Sherrill Diller

Prophylaxis 2012 – Dr. Joanna Davis

Kids, teen and youth programs

Rap sessions – Men’s Women’s, Teens, and Spanish

July 27th – 29th

Embassy Suites Boca Raton

3WINTER 2012 • LIFELINE

Register Today online for the Walk! It’s Easy!

1. Log on to www.hemophilia.org/walk 2. Click on: “Florida Walk” Tab.

If you are a New Walker: 1. Click on: REGISTER and create a

New Account

Returning Walkers:1. Enter your Username and Password

(from 2011) and click Login.(If you forgot your username/password, follow the New Walker instructions)

Next: To Complete the Process1. Then click either: Register as an

“Individual”, “Join a Team” OR “Create a Team”.

2. And follow the instructions.3. Fill in your information and start

fundraising!!!!

Personal Page and Team PageYou can customize your Personal and TeamFundraising Page with photos, messages,personal stories and much more!

2nd Annual Walk in the JungleSaturday, April 28, 2012

at Jungle IslandSupport Hemophilia and Bleeding Disorders

by Walking on the 28th!

Every Step Makes ADifference!

For Questions contact the FloridaHemophilia Association at 305-235-0717

or walk@floridahemophilia.org

www.facebook.com/floridahemophilia

How to Register Como Registrar

2nd caminata annual en la selvaSabado, Abril 28, 2012

en Jungle IslandApoye a la comunidad de Hemofilia y

desordenes sanguíneos caminando el 28!

Regístrese hoy para la caminata!!! Es muy sencillo!

1. Connectese a www.hemophilia.org/walk2. Aprete en: “Florida Walk”.

Si usted es un nuevo participante:1. Apreté en: REGISTRO y establezca unanueva cuenta

Para participantes anteriores1. Entre su nombre de usuario y palabra

de seguridad (del 2011) y apreté Login(si se le olvido el nombre /palabra de seguridad, siga las instrucciones del Nuevo participante)

Siguiente paso: Completar el proceso1. Apreté la tecla apropiado: regístrese

como “individuo”, “únase a un equipo” O “establezca un equipo”

2. Y siga las instrucciones3. Complete su información y comience a

recolectar fondos

Pagina personal y pagina del equipoUsted puede personalizar su página y ladel equipo con fotos, mensajes, historiaspersonales y mucho más!!!

Cada paso hace una diferencia!

Para preguntas llame a Florida Hemophilia Association al

305-235-0717 o walk@floridahemophilia.org

www.facebook.com/floridahemophilia

4 WINTER 2012 • LIFELINE

15th Annual Holiday Duon Sunday, December 11th, the Florida Hemophilia

Association hosted its 15th Annual Holiday Duo FamilyPicnic at CB Smith Park. We had agreat turnout! The families enjoyed amarvelous barbecue lunch catered byPicnic King. The children enjoyedsnow cones and cotton candy as wellas a hula hoop contest. It was great tohave DJ Tony back spinning his tunesthis year.

Making a return appearance againthis year, was the Hialeah FirefightersBenevolent Association, (HFBA) and Santa Claus. Hats off toHFBA for the festive holiday decorations and pictures withSanta for each of our children and for arranging for Santa andhis firefighter elves to come out and spread some holiday cheerto our families and kids.

We had some fabulous raffle prizes and each child wenthome with a gift from Santa. Thank you to all of our sponsorsfor making this event possible. Also, a round of applause to allof the volunteers who helped with getting raffle prizes, and setup the day of the event. You’re the best!

We look forward to seeing all of you next year at theHoliday Duo Family Picnic.

ThanksAccredoBaxter

Bayer HealthcareCurascript

CVS CaremarkOctapharma

Walgreens Infusion Services

A very special “Thank You” to our

Sponsors

O

5WINTER 2012 • LIFELINE

FDA Approves HIV Vaccinefor Human Trial

n HIV vaccine developed by researchers from the Universityof Western Ontario (UWO) was recently approved by the

U.S. Food and Drug Administration (FDA) for clinical trials inhumans.

A team led by Chil-Yong Kang, PhD, a researcher andprofessor at UWO’s Schulich School of Medicine & Dentistry,created the unique vaccine, known as SAV001, by using a killedwhole HIV-1 similar to the killed whole virus vaccines forhepatitis A and influenza. The virus is genetically engineered sothat it does not cause disease and can be generated in largevolumes. SAV001 is being developed with the support ofSumagen Canada Inc., a subsidiary of Sumagen Co., Ltd., aKorea-based pharmaceutical company specializing in HIVvaccines.

The SAV001 vaccine still needs to pass through the followingthree phases of human clinical trials before it becomescommercially available:

Phase I, which begins this month, double checks the safetyof the vaccine in 40 HIV-positive volunteers.

Phase II will measure immune responses in approximately600 HIV-negative volunteers who are in the high-risk categoryfor HIV infection.

Phase III will measure the efficacy of the vaccine inapproximately 6,000 HIV-negative volunteers in the high-riskcategory for HIV infection.

“FDA approval for human clinical trials is an extremelysignificant milestone for our vaccine, which has the potential tosave the lives of millions of people around the world bypreventing HIV infection,” said Kang.

Source: The University of Western Ontario press release dated December 20, 2011

La FDA aprueba vacuna contra el VIH para ensayos en seres humanos

Fase 1: comienza este mes y busca comprobar la seguridadde la vacuna en 40 voluntarios infectados por el VIH.

Fase 2: determinará las respuestas inmunitarias enaproximadamente 600 voluntarios no infectados por el VIH yque se encuentran en la categoría de alto riesgo para lainfección por VIH.

Fase 3: determinará la eficacia de la vacuna enaproximadamente 6,000 voluntarios no infectados por el VIH yque se encuentran en la categoría de alto riesgo para lainfección por VIH.

“La aprobación de la FDA para los ensayos clínicos en sereshumanos es un logro sumamente importante para nuestravacuna, la cual tiene el potencial de salvar las vidas de millonesde personas alrededor del mundo al prevenir la infección por elVIH”, expresó Kang.

Fuente: Comunicado de prensa de The University of Western Ontario, fechado20 de diciembre de 2011

A

La Administración de Fármacos y Alimentos (FDA) de los EE.UU. aprobó recientemente una vacuna contra el VIH

desarrollada por investigadores de The University of Western Ontario

(UWO; Universidad de Ontario Occidental) para ensayosclínicos en seres humanos.

Un equipo liderado por Chil-Yong Kang, PhD, investigador yprofesor de la Facultad de Medicina y Odontología Schulich dela UWO, creó esta excepcional vacuna, conocida como SAV001,utilizando VIH-1 entero inactivado similar a las vacunas convirus entero inactivado para la hepatitis A y la gripe. El virus esgenomanipulado de forma tal que no causa la enfermedad ypuede producirse en grandes cantidades. El SAV001 se desarrollacon el apoyo de Sumagen Canada Inc., una filial de SumagenCo., Ltd., una compañía farmacéutica con base en Corea que seespecializa en vacunas contra el VIH.

Antes de que esté disponible comercialmente, la vacunaSAV001 todavía debe ser sometida a las siguientes tres fases deensayos clínicos en seres humanos:

NHF eNotes • January 2012

6 WINTER 2012 • LIFELINE

Our Thanks to YouFHA gratefully acknowledges our donors who have so generously contributed to us in 2011

$50,000 and overBaxter

$25,000 - $49,999Bayer Healthcare

$15,000 - $24,999Pfizer

$10,000 - $14,999CSL Behring Novo NordiskOctapharma Walgreens Infusion Services

$5,000 - $9,999Accredo HealthBiogen, IdecBioRXCurascriptCVS Caremark Grifols, USA

$1,000 - $4,999Baptist Health South FloridaCoram Hemophilia ServicesFlorida Christian SchoolGDZ Computer ServicesArapahoe Nation - Todd GobervilleHemophilia AllianceKedrion USANovis PharmaceuticalsPalmetto Bay Village CenterTalecrisTJX FoundationWells Fargo Bank

$100 - $9994 Girls FoundationA-1 Tri State Construction

CorporationAcker Morris PAKristin AditAll Star Auto BodyNick AltrecheJudy, Esther & Esther AlvarezIvon & Ivonne AlvarezCarlos AlvarezAllison & Ivan AlvarezJudith AlvarezSandy ArioliAXA FoundationJorge AzorBaxter International FoundationWanda BedellNicole Beit-HalachmyBennett/Cahill Contractors, Inc.Stephen BerenzweigSally BerenzweigMargaret BerndtCharles BerndtJavi & Aida BetancourtLaura & Carlos BetancourtRobert BettsWendy Blaugrund BrownRochelle Blum & Martin ClaireEileen & Bob BreakstoneDeena BritoDavid Burgeson

Armando BurgosMelissa CanoTina Capello & FamlyDonna & Olivia CardetBob & Beth CarlinMercedes CarlsonMolly CarranzaLisa CartwrightGuido CastroFrank & Val CeruttiTimothy & Leslie ClarkCompuquip TechnologiesVictor CruzRenay CummingsCyber-Fox Trading, Inc.de Mari Dental PracticeThe Deason FamilyJessica del AlcazarMichael DeLorenzoFederico DiagoDinorah DiazDon DurandoBill & Cece DykasJay EichelCarolina EscobioJohn & Jan Espinosa & FamilyJohn G. Espinosa Financial GroupClaudine FaiferRaul FernandezGilda & Orlando FernandezJim & Nuala FinnSharella FlowersTony FrallicciardiLuis FreitasJuan (Joselito) FuentesRandy FurbyJeffrey & Pamela GaleOswaldo, Joaquin &

Adrian GanozaJaime Garcia, M.D.Yamida GarciaHector Garcia-OrtizRobert GilmanHugo GomezJason GreenStephen & Robin GreeneAnthony & Melissa Grosskopf-

MocegaKaren HamorskyBaby HansrajHialeah Firefighters Benevolent

AssociationHirschorn FoundationGeorge HittHolt Lee Construction, Inc.Wallace HuertasJessica HughesLilian IzaguirreJackson National Life Insurance

CompanyRaj JagnananKahn Carlin & CompanyTony & Cathy KalamasS.R. Kanisetty, MDBarry KatesLinda KellerHowie & Liz KleinbergJerome Kornbluth & Emily AronsonDana KuhnDave LauBilly LazarusLearn Aid of Puerto RicoArthur & Dary LewisLifeline PharmaceuticalsLarry Madeirous MemorialDavid Maingot

Karen LoneyMarty MalagaWayne MartucciMaria F. MatizMattcon GCRhonda & Don McNielRona MillerJonathan MillerFairy MillsCarol & Hal MilsteinDavid MilsteinDon & Gail MitznerAndrew & Peyton MobayedMilly & Jesus MoralesElizabeth MountcastlePaul MunceyJohn MusumeciJill NissonHarry NonsanchukLinda NorrisOcean ChiropracticJonathan OhebshalomPete OldburyRafael Arnaldo OlivieriPeter O’MalleyJohn ParlerJoe PavlockCharlie PaxtonAlex & Sasha PerezIleana PerezFernando Perez-CoiraTom PhillipsPhillips & Richard PAVito PisaniPizza MastroCarlos PlaudThe Prudential FoundationAlfredo RavinetFamilia Reyna-RiveraChris RicciEagan RifasAdrian & Daniel RiveraCarlos RiveraElisa RobbinStephen & Laura RobbinsAnita RobrishJanyra & Gadiel RosarioCharles RousseauJamie RubinJuan Camilo RuizJennife RuthRobyn & Jon SalkEileen & Ira SalkRussell & Jennifer SalkSanchez Family Michael SchlesingerWendy & Carl SchreckMarite SchwarzFamilia Schwarz IglesiasLori Seidler (Abrams)Robin SeskinSheldon SiegelSyma SilvermanMark Simon Carol & Steven SmithStaci SolomonSouthern Wine & SpiritsMark SrourVickie StrangeJohn SwarthoutRichard SwoiskinSteve & Devi TejiramThe Ethical FactorRick & Linda ThomasMarilyn TolleyTravel Ventures of America

Sandi & Ed TuckerUnited Way of Dade CountyElizabeth & Steven VainderWillie VegaEmanuel VelazquezHerb & Donna WeberHeather WeinbrumJeffrey WeissScott WiseMary & BrettWoodYoshino Trieschmann

Design GroupJill YoungswickHerbert & Susan ZarkinTanya Zuckerbrot

$25 - $99Claire AbbatielloTausha AbneyAna AcevedoElsie AcevedoThe Acker FamilyCamille AdalumoDebbi AdamkinCorey AdamkinDavid & Carol AdamkinCraig AdlerAdvanced Mortgage PlannersPhoolmatie AldanaLynn AlexanderPatricia AlvarezRuben AlvarezIvette AlvarezJessica AlvarezAgnes AmoreBarney & Barbara AmosChris AndersonMonike ArchillaLuz Stella AricapeBeatriz ArmandAlicia ArmenterosMichael AsmarJill AspdenPeachie AttonitoCarolina AyusoDaisy BacaVicky BarbaYvonne BareChris BarleyPaula BarzagaJacqueline BarzagaMia Mari Barzaga-PerezDaniel BassSandra BazainGregory & Dawn Marie BedusaShari BenderSusan BenjosephTamar & Yoni BenjosephJose Luis BereicuaPauline BermanLilliam BervisIngrid BessererGladys BetancourtNikki BettsChetram BipathVidal Blanco Family Wanda Blanco MendezJulie BliemelLaurie BlochBurt & Jackie BloomSeth & Barbara BlumRobert BoasFrances BonaguraVeronica BorgesJavier Borrero

Jamie BramanPatrice BravoPhyllis BresslerMarisete BretoneAnne BroganDiane BrooksSheila BrooksJon Brooks -Pocomoke TribeRay BroughtonAlan & Elaine BrownDoug & Julie BrownChad BrownValerie BrueinTom BurkeBernard BushellSonia CaicedoPaul CallihanKarell CampbellMindy CampbellJosephine Camps - ParedesGuillermo Cancio-BelloLynne CaprettoEustaquia CarbonellMichael CardenJohn & Carmen CardenBeatriz CardonaIrene CarleyStephanie CartagenaLenore Cartier-CarltonAda CarvajalLinda CaseCynthia & Jeff CaspiReina CastanedaMarge CestaDebbie ChampionRobert ChangDebbie ChitwoodJennifer ChoppingRuthie CoakleyDiane ColemanAllen ColemanJustin ColonLara ColtonDavid ConfessoreMegan Connolly Cyndy CoorsSandra CornettLinda & Richard CostaCesar CouriSue CowellAda CruzFrancisco CruzDebbie CulpepperAimee DavisGabriela de Cespedes-LopezMarisabel de JesusDianne de la CruzAndrew De La FuenteDawn De oroGloria Del SolarRuth & Len DenbinDale DenioLisa G. DeverLily DiazThe DiChiara FamilyLouis DiCriscioAnthony DiDomenicoJames DillonDoreen DiscavageMadelyn DonesJorge DonesAngel J. DonesAngel M. DonesStacy & Daniel DorbChrista Betterly DramLinda Dube

7WINTER 2012 • LIFELINE

…continued “Donors List”

Eduardo DuBouchetTim DuncanRhonda DuranteArthur DurazoAndrea DyalKathleen DyceLiselle EastoLaura EbbageBonnie EifertStuart & Rona EisenJordan ElbaumTodd EllenbergKarine EnderleMaurice EsperanzaPatricia Espinosa ThompsonGus EspinosaLinda ExpositoEye Spy Media TechnologiesLiz FabryLori FabryRoni FaermanKaren Fahy AhrendAdriana FariaMartha FayPaula FayJoy & Izzy FeingoldDJ FeldmanJeffrey FeldmanHoward FeldmanSam FensterstockLeslie FerraraKrista Flood RidgardSharella FlowersB. Rachelle FowlerBob FoxBernadette FoxCharles FoxCathy FoxJulian FriedmanCecy & Eddie FrometaAdam FulghumScott FurrFuture Data VisionBianca GabayNikolas GarciaAmerica Y. Garcia OjedaLuis Garcia-ChaconAntonio GelbsteinGerald GlassmanLouise GleasonDoug Gluck & Sandy SiegelMelanie GoesseleMarilyn GoldbergSandra GomezLiliana GomezCarmen GonzalesMargarita GonzalezGrace GonzalezMarizay Gonzalez-PoggiLourdes GoodmanKathleen GoodmanJim & Hilary GottliebAdam GouldNorbert GraberFred GreenJane GreenbergMichael GreenlandBill Griffis Joe GulinoGVF, Inc.Patrick HackshawDiana HallRussell HamiltonJodi HammerDon HanHartly PersonnelJohanna HeerLizie HeilbronRommel HernandezRaul HernandezMarta & Lourdes HerreroGinny HillRhonda Hines Ilene Hirsch

Nancy HoffmanMelissa HollowayHometown Dry CleanersDebra HoodJohn HooverMatt & Kim HughesMary IdsardiHarry IrizarnyJill JacobsWadie JagnananSham JagnananDevindra JagnananBrandon JeanneretBetzaida JimenezAl Gerone JohnsonWilliam & Mary JohnstonTerri JordanJonathan JordanCathlin KaganJohnanthony & Kallianna KalamasAmy KaufmanPaula & Jerry KayeCarol KellerElizabeth KerwinBruce & Barbara KesslerJaime & Zachary KeyesJuan KippermanRuth KippermanMireya KleinShari KlineBeth KokolBonita KormosJohn KrisselJames KristSoulange KrugerShauna KrupnickKathy & Gary KunzSusan LabelloMyriam LagomasinoOlga LagomasinoBruce LamchickRoxanne H. LancellaDawn LeBlancArlene LeePedro LegrandEdward LehmannSherri LeiserDaniel LeventryDavid LevinJeffrey LevinDonna LevineJeff LevyLiliana’s Custom DrapesWendi LipsichDiana ListaMichelle LongsworthJennifer LopezVictor LopezDiana LopezBev LopezKim LopezDr. Marisol Lopez-Belio, DDSWayne LoringDiana LouzadoNancy & Ed LoweyHaydee LugoDiana LutkeThe Macy FamilyAnn ManciniIra MandellManhattan Mortgage CompanyAmanda ManosEJ & Steve MantonKhemraj MarajLawrence MarinAlex MarinMarta MarinNora MarinHoward MarksElizabeth MarquesLori MartinSaylin MartinezEmilio Mascaro IIAnnabelle Matias

Maria McDonaldCassie McGovernAlison McKeeGabriela McKernanEnid MedinaSona & Italo MedinaThe Melgaard FamilyAngie P. MenaClaudia MenaBirgitta & Joe MendolaElsa MendozaThe Mercado FamilyVanessa MesonesJohn & Roxanne MestreLourdes MetcalfeBrenda MeyerJen, Brad & Adam MilsteinNancy MintonPatricia MoghariMomentum MarketingAna MontenegroMichael MorabitoYamile MorabitoRichard D. Morales, DMD, PAColby MoranRosemary MossingerBarbara Mujica MatiasIvan MurattiMaureen & Marty MurphyAl Nakis RealtorAlex NaranjoNydia NavasDana Pearl NegriBecky Neller McQueenDavid & Emily NetburnCathy NewmanKavita NiranjanVanessa NoriegaCarlos NunezKaren OddoneJennifer & Ryan O’KuhnElyssa OlginThe Olivares FamilyDiana OliveiraIrene & William OlmedaJose OrtegaErick OrtegaCarolina OrtizValerie OrtizMirta OteroFamilia PachanoRosario PachecoDeena PadnisBetty PankauBarbara Panzer Paragon Hemophilia SolutionAna PardoThe Parris FamilyThe Peguero FamilyHilda & George PercyMelissa PereraBruce & Penni PerezEdward L. PerezIvonne PerezDoris PerlmanBeckey PersaudKaren PeryFina PhillipsSteve PhillipsJavier PierluisiMiriam PimentelNicole PimentelRonnee PinderDeborah PinesRaul & Patricia Pino FullanaJoseph Pitre Vanessa & Jimmy PlaBarbara PoliacoffSeymour PolishookLisa PollardDina PopperCheryl PorterKenn PowellRohit Prakash

Damian PrattPremier Dental CareJose PrietoJamie ProssCleopatra PuertoVivianne QuinonesElizabeth QuinonesJose & Cristy QuinonesDarcie QuinonezRebecca & Carlos RacitiPaul RaitanoLaura & Andrew ReissJennifer ResnickSally RicciRice Psychology GroupLaura RiesDiane RinconElaine & Jeffrey RiveraDavid RobertsAlise RobinsonCristina RodriguezAlexander RodriguezJacqueline RodriguezYaidelin RodriguezRobert RodriguezTim RohloffAngel & Louise RojasJames RoofCarolyn Rosa Arlene RosadoYolanda RosadoCharles RosenbalmCraig RosenthalMelinda RosenthalDawn RotelliniSusan RothenbergMichelle & Greg RoventiniLeslie RoyKari RubenEstelle RubinMaria & Rachelle RubinDavid RuckerAnthony RusselloLiliana SabinRivolane SacksMatthew SafarikKenny SalkMac SalmonMiriam SanchezMaribel SanchezAida Sanchez-GomezSarah & Mike SandlerBejai SanicharaRenee SansaricqNoelle SansaricqMaria E. SantaellaAnibal SanzMichelle SarasonBillie ScarboroDenise SchacherStuart Scherline & Alan PateJeanine SchmidtAlan & Margie SchnallMegan SchonerJeff SchorrJeff, Lisa (Landis) and

Jordan SchulzAntoinette SchwartzRaul SchwarzAna I. SchwarzLaura SchwarzManju SeermanEric SeidenJessica SeidenGail SeidmanHeidi SellFreddie SemideyLorraine ShapirHamala SharmaTaijpaul SharmaHope ShashaJohn & Maggie ShawRowland J. ShawHarriet Shea

Laura ShechterBill SheehanWendy ShellClayton ShillingfordMelissa ShoreFrancine SilverMichelle SilvermanBarbara SimonMelanie SimonRam SinghDana SmithlineRosario SolaresMarisel SordoJack & Phyllis SpearHeather SpencerCzarina SpielerJennifer SpielmanLoren SpottsGail StankoElena SteleBarbara SternArline SternDeb Stern PrattSuzanne StewartPaul, Traci, Kapri &

Anakka Stickley Sheryl StiefelPaulette StraussLaura StrehleRobert StringerSabine StrobelSuffolk Wellness CenterSavitre SukhlallSunny Marine EnterprisesSusan SwindleAmanda & Sean TanzerJessica TelchinLouis TestaJulie ThorntonDavid TignorElena & Johana Quinones TorresCharlene ToubyMonica TremblayCarl TrenzPedro TrianaFrancisco & Elvira TruccoTami TrujilloEllen TurkoLinnette UmanaTrina UnzickerMaryellen UptonAl & Rosa ValdezFrank VannLeonidas VelardeMyriam VizcainoLoreana von PlockiTammy WagnerClaudia WagnerPatricia (Trish) WalshMegan WeilGail WeinbrumGloria WeisbrodDavid WeisenbergSavannah WeissDebbie Wexler-HazanMarcy Betts WhiteJim WhiteMarla WildermanStuart WolkWonderfultouch Massage

TherapyPatricia WoodCJ WordenJamie XenakisPriscilla YordanRenee YoungBelinda & David ZeitouniMark ZeitouniLori ZieglerSharon ZitrinJen ZuckerbergHoward Zwang

8 WINTER 2012 • LIFELINE

Investigators Publish Two Studies Using UDC Data

pair of studies in the December 2011 edition of the

American Journal of Preventive Medicine highlighted some

notable findings from data collected by the Centers for Disease

Control and Prevention (CDC).

In the first study, “Insurance, Home Therapy, and

Prophylaxis in U.S. Youth with Severe Hemophilia,” the authors

reviewed data from the CDC’s Universal Data Collection (UDC)

project, a voluntary surveillance system that relies on patient

enrollment.

The lead author of the study was Judith R. Baker, MHSA

Department of Pediatric Hematology/Oncology, University of

California Los Angeles.

Included in the study was a nationwide cohort of 3,380 boys

and young men with severe hemophilia A or B, ages 2-20 years

old, all of whom had received care at a federally funded

hemophilia treatment center (HTC) between January 1, 2008,

and December 31, 2010.

The results showed that 90% of patients used home therapy

and 78% were on a prophylaxis treatment regimen. Only 2%

were uninsured. Investigators found that those with health

insurance were much more likely to be on prophylaxis (77%) vs.

those who were uninsured (21%). The data also showed

significant correlations between race, age, inhibitor status, and

HTC use, home therapy use and prophylaxis.

“Youth with severe hemophilia who annually obtain care

within the U.S. HTC network had a high level of health

insurance, home therapy, and prophylaxis. Exploration of

factors associated with insurance coverage and yearly HTC

utilization, and interventions to optimize home infusion and

prophylaxis among youth of African-American and ‘other’

race/ethnic backgrounds are warranted,” concluded Baker and

her colleagues.

Investigators also drew on UDC data for the second study,

“Physical Functioning in Boys with Hemophilia in the U.S.”

The lead author was Paul E. Monahan, MD, Department of

Pediatrics, Hematology/Oncology, University of North

Carolina at Chapel Hill.

Researchers reviewed 15 potential predictors of poor physical

functioning in boys with hemophilia A and B (up to 18 years of age)

who had received care at an HTC between 1998 and 2008.

They found that several characteristics were associated with

limitations of joint function, including increasing age, presence

of joint bleeding and inhibitors. African-Americans were also

independently associated with activity restrictions. In addition,

obesity and medical coverage with Medicaid, as opposed to

private health insurance, were independently associated with

multiple poor outcomes.

“Interventions focused on eliminating inhibitors, improving

outcomes for African-American children with hemophilia, and

maintaining healthy body weight are warranted. In addition,

strategies are needed to assure adequate insurance coverage for

all people with hemophilia to eliminate economic barriers to

optimal functional outcomes,” the authors concluded.

Source: Obesity, Fitness & Wellness Week, January 7, 2012

A

NHF Newsletter Story • February 2012

The National Hemophilia Foundation is pleased to offerEducational Participant Grants for first-time attendees to its 64thAnnual Meeting, “Mapping Our Future” in Orlando, Florida,November 8-10, 2012. The Annual Meeting enables our commu-nity to come together and exchange information on a wide vari-ety of topics, from the basics of diagnosis to the most recent andrelevant developments in treatment and technology. It is the pre-mier opportunity for networking and support for individuals andfamilies affected by bleeding disorders. NHF currently provide$30,000 annually to families who wish to attend the meeting andtake advantage of the wealth of information and educationalopportunities during the annual meeting.

Application forms may be downloaded by going towww.hemophilia.org

Application Deadline:Letters must be postmarked by Friday, June 22, 2012.

For More Information Contact: sroger@hemophilia.org.

Educational Participant GrantsNow Available!

ATTENTION FIRST-TIME ANNUAL MEETING ATTENDEES!EducationalParticipant GrantsAvailable for NHF’s64th “Mapping OurFuture”

9WINTER 2012 • LIFELINE

n par de estudios en la edición de diciembre de 2011

del American Journal of Preventive Medicine (Revista

Estadounidense de Medicina Preventiva) destacaron algunos

hallazgos notables de los datos recolectados por los Centros

para el Control y la Prevención de Enfermedades (CDC).

En el primer estudio, titulado “Seguros médicos, terapia en

el hogar y profilaxis en jóvenes estadounidenses con hemofilia

grave” (Insurance, Home Therapy, and Prophylaxis in U.S. Youth

with Severe Hemophilia), los autores analizaron datos del

proyecto de Recolección Universal de Datos (UDC, por su sigla

en inglés) de los CDC, un sistema voluntario de vigilancia que

depende de la inscripción de pacientes.

La autora principal del estudio fue Judith R. Baker, MSHA,

del Departamento de Hematología y Oncología Pediátrica, en

la Universidad de California, Los Ángeles.

En el estudio se incluyó una cohorte a nivel nacional de 3,380

niños y hombres jóvenes con hemofilia A o B grave, de entre 2 a 20

años de edad, todos los cuales habían sido atendidos entre el 1 de

enero de 2008 y el 31 de diciembre de 2010 en un centro de

tratamiento para la hemofilia (HTC, por su sigla en inglés)

financiado con fondos federales.

Los resultados mostraron que 90% de los pacientes

recibieron terapia en el hogar y que 78% estaban en un régimen

de tratamiento profiláctico. Sólo 2% de ellos no tenían seguro.

Los investigadores encontraron que aquellos que tenían seguro

médico tenían mucha más probabilidad de estar recibiendo

profilaxis (77%) que aquellos que no tenían seguro (21%). Los

datos también mostraron correlaciones significativas entre la

raza, la edad, la presencia o no de inhibidores, y la asistencia a

los HTC, la terapia en el hogar y la profilaxis.

“Los jóvenes con hemofilia grave que obtienen atención

médica cada año dentro de las redes de HTC en los EE. UU.

tenían una alta frecuencia de seguro médico, terapia en el hogar

y profilaxis. Se justifica el análisis de factores relacionados con

la cobertura de seguro y la utilización anual de los HTC, y las

intervenciones para optimizar las infusiones en el hogar y la

profilaxis entre los jóvenes afroamericanos y otras razas o

etnias”, concluyeron Baker y sus colegas.

Los investigadores también

utilizaron los datos del UDC

para el segundo estudio,

titulado “Funcionamiento físico

en niños con hemofilia

en los EE. UU.”

(Physical Functioning

in Boys with Hemophilia

in the U.S.). El autor principal

fue el Dr. Paul E. Monahan, del

Departamento de Pediatría, Hematología y Oncología, en la

Universidad de Carolina del Norte en Chapel Hill. Los

investigadores revisaron 15 posibles factores pronósticos de

funcionamiento físico deficiente en niños con hemofilia A y B

(hasta los 18 años de edad) que recibieron atención médica en

un HTC entre el 1998 y el 2008.

Encontraron que varias características se relacionaban con

limitaciones en el funcionamiento de las articulaciones, entre

ellas una mayor edad, la presencia de hemorragias articulares y

de inhibidores. Los afroamericanos se relacionaban también de

manera independiente con restricciones en las actividades.

Además, la obesidad y la cobertura médica con Medicaid, a

diferencia de la cobertura con seguros médicos privados, se

relacionaban de manera independiente con múltiples resultados

malos.

“Se justifican las intervenciones enfocadas en eliminar los

inhibidores, mejorar los resultados en los niños afroamericanos

con hemofilia, y mantener un peso corporal saludable. Además,

se necesitan estrategias para garantizar una cobertura de seguro

adecuada para todas las personas con hemofilia, de forma que

se eliminen las barreras económicas para resultados funcionales

óptimos”, concluyeron los autores.

Fuente: Obesity, Fitness & Wellness Week, 7 de enero de 2012

U

Investigadores publican dos estudiosutilizando datos del sistema UDC

HEMOPHILIA CLINICS

All Children’s Outpatient

Care Clinic

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

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

Joe DiMaggio

Children’s Hospital

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

Lee Memorial Hospital

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

Nemours Children’s

Clinic, Jacksonville

Department of Pediatric Hematology/Oncology807 Children’s Way Jacksonville, FL 32207Phone: (904) 697-3789(904) 697-3600 www.nemours.com

University of Florida

Department of Medicine Adult HemophiliaP.O. Box 100277 Gainesville, FL 32610Phone: (352) 265-0725

University of Florida

Pediatric Hematology/OncologyP.O. Box 100296Gainesville, FL 32610Phone: (352) 273-9120www.peds.ufl.edu/divisions/hemonc/

Nemours Children’s

Clinic, Orlando

Department of Pediatric Hematology/Oncology83 West Colombia St.Orlando, FL 32806 Phone: (407) 650-7230

Sacred Heart Pediatric

Hemophilia Program,

Pensacola

Phone: (850) 416-7712

St. Joseph’s Children’s

Hospital

Pediatric HematologyOncology Out-patient Clinic3001 W. Dr. Martin Luther King Jr. Blvd. Tampa, FL 33607Phone: (813) 554-8294 or (813) 321-6820

The University of Miami

Hemophilia Treatment

Center

Pediatric Clinic LocationACCW-5A1611 NW 12th AvenueMiami, FL 33136Phone: (305) 585-5635

Adult Clinic LocationACCW-3A1611 NW 12th AvenueMiami, FL 33136Phone: (305) 243-6925www.htcextras.org

USF Adult Hemophilia

Center

Department of Internal Medicine12901 Bruce B. Downs Boulevard, MDC 19Tampa, FL 33612Phone: (813) 974-1325

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

18001 Old Cutler Road, Suite 309Palmetto Bay, FL 33157Toll Free: (888) 880-8330www.floridahemophilia.org

Newsletter Committee:

Debbi Adamkin, Maria Rubin, Denise Schacher, Linda Thomas, and Amy Williams

Design and Production:

Group M, Advertising & Design305-235-2538

Florida Hemophilia Association Office(888) 880-8330

Vice PresidentBarbie Arrebola

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

National Hemophilia Foundation Office (800) 424-2634

HemophiliaFederation Office(800) 230-9797

LA KelleyCommunications, Inc.Free resource material on Hemophilia(800) 249-7977

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

11WINTER 2012 • 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)18001 Old Cutler Road, Suite 309Palmetto Bay, FL 33157