Executively SpeakingPage 2

Community CornerNew Staff Member New Board Member Justin’s PoemPage 5

NFH NewsPage 8

FHA Resource CenterPage 11

The Official Newsletter of the Florida Hemophilia Association

WINTER 2013

INSIDE

1

he 3rd Annual Hemophilia Walk in the Jungle will take place on Saturday, May 4, 2013

at Jungle Island. So save the date! The Walk is ourlargest fundraiser of the year and with attendancenearing 1,000 people, we are spreading moreawareness about hemophilia and other bleedingdisorders than ever. Last year’s walk raised$92,000, and this year we are setting our sights onbreaking the $100,000 mark!

To kick off the Walk season, we are going to startwith a contest. Any walker that raises $500 or moreby March 15, 2013 will be entered into a drawing towin a $50 gift card. Don’t forget you have to registerto participate in the Walk! And if you can’t make it onthe day of the Walk, don’t fret. You can still create ateam and raise money too!

T

3rd Annual“Walk in the Jungle”

See you in the

Jungle!

To register for the Walk: • Go to www.hemophilia.org/walk• Click on “FL”• If you are a team captain, click on “Create a

Team” and fill out registration form• If you are a walker joining a team, click on

“Join a Team” and fill out registration form• If you are interested in walking but do not

have a team, click on “Register” and fill out registration form

Volley for a Cure Tennis TournamentThursday, March 7

Black and Blue Bash WalkFundraiser Bogart’s Bar and GrilleSaturday, April 13

Inhibitor Family CampApril 19 – 22For more information, visit:www.comphealthed.com

3rd Annual Hemophilia Walkin the JungleSaturday, May 4

Swim with DolphinsFriday, June 14Friday, July 12 Friday, August 2

30th Annual Family EducationSymposiumSeptember 6-8

“SAVE THE DATE”

ExecutivelySpeakingWe’re off to a great start for 2013 with several great outings/events that we hope you’ll take part in. One

event that I’m extremely excited about is the upcoming “Walk in the Jungle”. We launched the Walk three

years ago to help raise awareness of hemophilia and bleeding disorders and to offer an activity that families

and people of all ages would enjoy partaking in. The Walk has proven to be our biggest fund-raiser that affords

us the opportunity to provide you with annual programs such as, the Family Education Symposium, Mother’s

Brunch and Dolphin Day Camp. Through events like our Walk, golf tournament and Volley for a Cure we

continue to come together as a community and educate the general public about bleeding disorders.

We would like to thank everyone who supported FHA in 2012 and made it possible for us to continue our

mission of serving the bleeding disorder community in Florida and providing programs and services throughout the course of the year.

Below is a chart that describes how funds were distributed for the 2012 programming and a list that highlights the many individuals,

corporations, and donors who supported our worthwhile cause.

Hemos empezado con éxito el 2013 con varios eventos en los queesperamos puedan participar. Uno de estos eventos, y del cual estoysumamente emocionado, es la próxima "Caminata en la Selva”. Hace tres añoslanzamos esta caminata para ayudar a crear conciencia sobre lo que es lahemofilia y otros trastornos de sangrado, y al mismo tiempo ofrecer unaactividad en la cual las familias y personas de toda edad disfruten participando.La caminata ha resultado ser nuestro evento recaudador de fondos másimportante, el cual nos brinda la oportunidad de ofrecer programas anualescomo, el Simposio Familiar de Educación, Campamento de Día de Delfínes yBrunch de las Madres. Debido a actividades como nuestra caminata, torneo degolf y Volley para la Cura, seguimos uniéndonos como comunidad y educamosal público en general sobre los trastornos de sangrado.

Quiero aprovechar esta oportunidad para agradecer a todos los queapoyaron a FHA en el 2012 e hicieron posible que podamos continuar nuestramisión de servir a la comunidad que sufre trastornos de sangrado en Florida yasí poder proporcionar programas y servicios durante el transcurso del año.Abajo encontrarán un cuadro con la descripción de cómo fueron distribuidoslos fondos para la programación del 2012 y una lista que destaca a las personas,corporaciones, y donantes que apoyaron nuestra valiosa causa.

MensajeEjecutivo

Debbi AdamkinFHA Executive Director

2 WINTER 2013 • LIFELINE

Debbi AdamkinDirectora Ejecutiva de FHA

13%19%

7%

4%

57%

Allocation of Funds

57% Annual Programs

19% Publications and Marketing

13% Compassionate Care and Family Assistance

7% Board Meetings and Educational Conferences

4% Membership and Dues

4 WINTER 2013 • LIFELINE

Thank You for Your GenerosityFHA gratefully acknowledges our donors who have so generously contributed to us in 2012

$25,000 and OverBaxterBayerPfizer

$15,000 - $24,999Caremark RX

$10,000 - $14,999CSL BehringNovo Nordisk

$5,000 - $9,999AccredoBiogen IdecBioRX LLCCoram, Inc.Express ScriptsGrifolsThe Hemophilia AllianceOctapharmaWalgreens

$1,000 - $4,999Allstate FoundationBaptist Health South FloridaFlorida Christian SchoolHialeah Benevolent Firefighters

AssociationJackson National Life

InsuranceThomas MaherMarkham and Lisa LeventhalJennifer LopezNovis PharmaceuticalsTJX FoundationWells Fargo Zumba Fitness

$100 - $999Stacy AckerDebbi AdamkinAdvanced Mortgage PlannersIvette Alvarado-LeidermanAll Star Auto BodyAM PoolBarney and Barbara AmosAvionics Sales CorporationAvnetA.T. Williams DDSAlex AycartJim AzlingJorge AzorStanley and Ilene BarshayJoseph BaechlerMichelle BakerAna Maria BaqueroVeronica BarraganBruce BatchelderSally and Stephen BerenzwiegAnna BerndtRobert and Joan Bettinger BioMedComBioPlus Specialty PharmacyRochelle G. BlumShelly BlumDavid BrigmanBetty BrigmanJonathan BrooksSheila BrooksWendy BrownDaisy BuenoKarla BuenoC&C InsuranceCaldora Lighting DesignBecky CapogrecoCarlos and Becky CarballoBob and Beth CarlinMark CarlinFairy CarterLisa CartwrightThe Cesta Family

Val CeruttiRay and Onni CestaEmelie ChangClarin Eye Care CenterTim and Leslie ClarkClover Systems, LLCAndrea CoeColorado Jet Sales, LLCCommunity BankChristi ConnellRafael CoquisCow Licks Kids SalonKen CrandallChris DalyFrederick DeCampAndrew de La FuenteJuan de La FuenteRosemary de la HeriaLen and Ruth DenbinFederico DiagoCindy DiamondJames DilorenzoAndy DiMarinoVashti and Ileana DolanJorge and Madelyn DonesMaria DonesCece DykasBernard EbnerEdward Jennings Attorneys

at LawJay and Joan EichelElephantitoManny and Carolina EscobioJohn and Janelle EspinosaNicky EspinosaNorma Valdes EverseLori FabryRoni FaermanTrudi Fahey, MDClaudine FaiferStephanie FarahAdriana FariaFast SignsMaria FeldmanMonica FelzerMatthew FentonPedro FernandezRaul FernandezFFP, LLCKenneth FlickerJanell and Raymond FlowersMartin FrallicciardiUlises FrallicciardiSidney FreedlandNatalia FonsecaSteve and Barbara FormanDanielle Forte-WeiselbergDuarlin GarayJaime and Elizabeth GarciaYamida GarciaHector Garcia-OrtizRenea GargiuloCharles GerritsMartina Gerrits-de GrootGDZ Computer ServicesRobert GilmanGlobal Ocean Security

TechnologiesBettye GrantJennifer and Chuck GreenDamaris GreenfieldAimee GonzalezKetty GonzalezGroup MNorman and Marilyn GoldbergSteve and Joan GreenfieldMaurice Gusman FoundationRussell HamiltonAlison HarrisStephen and Deborah HillGeorge HittH.J. Ross Associates

Amy and John HookGiles and Elba HorrocksJessica HughesLilian IzaguirreJag Medical AssociatesSham JagnananEd JenningsWilliam and Mary JohnstonAngelique JongMarion JuddBarry KatesTati KatzJeffrey KellerLinda KellerOtto KellerKings Bay PediatricsPaul KlimekRichard KrisselAlan and Rose KurzweilLaw Offices of

Russ E. Robbins, P.A.Leder Global SolutionsSteven LevinLuis LizarragaMichelle LongsworthMarisol Lopez-BelioAndrea LuchsingerScott LydenKathy LytleNikita Lyons-MurrayMegan MageeFlorencia MaggiMarty MalagaPatricka and Cynthia MalambriLori MartinDebbie MartinezAlexandra MatosDon McNeilRhonda Lynn McNeilPaula McKinneyFernando MendozaCarol MilsteinDavid MilsteinJennifer MilsteinLizette MishievDon and Gail MitznerMichelle MojicaAlvaro MolinaKevin MorrisseyOliver MosesElizabeth MountcastleJohn MusumeciMaria NegrinMaria NietoHarry and Sally Nosanchuk David NugentCarlos NunezLiliana Olivares de MachlerVelyne Genece OloyePeter O'MalleyPalmetto Bay Village CenterChristine ParkerTony ParkerPhilip PaulAlex PerezGregory PensakLarry and Margaret PensakRichard and Vivian PensakVirgilio PensoIleana Perez-SalomDoris PerlmanKaren J. PeryTom PhillipsAllison PlaudVito PisaniSixta PortalatinNathan PossAndrea PotashPremier Dental CareThe Printing PostPro Performance Physical

Therapy and Wellness

Project 3815, LLCFernando PuigPure Skin & BeautyDavid RamirezGloria RamirezEileen RamosCarol RashChris RicciDan and Katy RicciLaura RobbinsManolo and Reidy RodriguezJ. RoggenburgDebbie RogginburgDr. Pedro and Rosangela RoqueKari RubenJamie and Laura RubinWayne RundellNatasha SaavedraIra and Eileen SalkJon and Robyn Salk Kenneth and Leslie SalkRussell and Jennifer SalkAdriana SanchezAlex and Janette SanchezMiriam SanchezGloria SangareBejai SanicharaPeter SantosBillie ScarboroLiliana ScarpettaBeatriz Scarpetta de PreschelMuriel ScemlaSebastien and Sandy ScemlaDawn SchlesingerMichael J. Schlesinger, P.A.Craig SchmidtWendy SchreckBenjamin SchwartzSeminole NationFran SevcikLorraine ShapiroStephen ShapiroCraig ShelanskeySheldon SiegelSyma SilvermanScott SimonSkin and Cancer

Associates LLPLorena SoulagesGilda SpeaTracey SpiegelmanRobert SteigeleBobby and Sorrell SteinVelia SzeinbeinAlina TapanesChris TejiramTel Aviv TexacoJackie ThayerRick ThomasNatalie ThompsonMarilyn TolleyTours Break AwayEd and Sandi TuckerAdam TylerUnited Way of MiamiAl Valdes, Jr. Carlos VaraRoberto VazquezFelipe VergaraMelinda Vergara Territoriale Laura VillarrealDenise VuonoDawn WalkerVirginia WalkerGerald and Gwen WardFiorella WargerHerbert and Donna WeberGloria WeisbrodMax WeintraubWhipporwill Pines

Associates, Ltd.Dylan White

Pamela WilliamsTom and Natalie WilliamsAlexandra WilsonScott WiseBruce WongHerbert and Susan ZarkinKris ZaparaniukJose Zreik

$1 - $99Francis AbadVacilisa AbreuAbsolute Demolition, Inc.Anthony AcevedoKamleta AditAimee AguiarMilagros AlavaradoFrank AlbarracinPhoolmatie AldanaAmanda AldecoaFazelia AliOlga AlonsoDavid AlonzoMaria Fernanda and

Veronica AlvarezDianne AmadorRoxana Nunez AmbrosiniAmore FamilyAmy AndermanDafne AndersonElizabeth AndradeMyriam AndradeCristina ArboledaJoseph A. Arenda, MDJimmy AriasLawrence AronowMiguel AscarrunzArtipelleArtistic VibesJorge AzelCathy BakerCynthia BaldiChristina BalseiroBank of AmericaDiana Baquerizo MotaRalph and Veronica BarbaKeosha BarrettLindsay BartelsDemetra BaxterBill BeckmanRodrigo BellettiniCherie BenjosephSusan BenjosephPauline BermanCarole BernsteinJennifer BertotLilliam BervisIngrid BessererNikki BettsClaudia BierschenkClayton and Joyce BlueRichard BonchickSonia BosqueDebbie BouchardRachel BoymanJoan BozsokiKellie BrannonBrannon SpecialtiesJulissa BravoDan BriggsDeena BritoBrannon BrittainAnne BroganHoward BrooksPhyllis BrooksEllen BrousElizabeth and Terrance BrownValerie BrueinChristopher BrunkDaniel BuigasJim BundyJose Burgos

Wellamo BurkheadAndrea CMiguel CalaIris and Robert CalleNicole CaldwellJan CameronLissa CanoRosa CarboneJohn and Carmen CardenBeatriz Cardona Heather CarlisleLeoncia CarrascoSarah CastanoYurusara CastellanoPablo CastellonCarlos CastilloAlfredo CeperoBruce CeresJohnna CestaMarge CestaRobert ChangKuan CheangLori ChencinFiorella ChiritoVelia A CilientoCitiwide Financial ServicesDanielle ClarkJoseph and Irma ClarkVictoria CollinsLinda and Justin ColonGabrielle ConeybeareWendy ConnollySandra CornettKenny CortinaLaurie CowanFernando CrespoDiego CrucesJuan CruzSusan CulmoOwen and Debbie CulpepperRenay CummingsAkim DKathy DDawn DavidJudy DavidsonLani DavisLouis De La CostaCoquin de La FuenteJuan Bruno de La FuenteBarbara de La NovalMiranda de La NovalPam DeGrootDale DenioGleydiane DeoliveiraCharles DeWaltElena DiazGerson DiazJuan DiazKarina DiazEric Diaz-PadronLori DiChiaraLouis DiCriscioEmma DieguezSandra DieguezJames DillonThomas and Kathleen DohertyJames DolanAngel Dones Jr. Stacy DorbAdrian DuranonaNorca DuranonaArturo DurazoKathleen DyerEva EarlyMelodee EbelTodd and Stephanie EisnerDoreen ErriahRosa Estorino-HillsExpress TravelCristina Faes Sam FarajzdehAlicia Farinas

5WINTER 2013 • LIFELINE

Dylan Farrah-PophamIsidore and Joy FeingoldMatthew FeldmanGayle FelzerAlberto FernandezAndy FernandezWanda FernandezDawn FerrariMichael FerraroFrancisco FigueroaKaren FishmanRobin FlaksDenise FlanaganBruce FletcherBecky FliegelSharella FlowersFrank FortuneB Rachelle FowlerCathleen M FoxElba D. FrallicciardiBethany FrankelHumberto and

Mercedes FranquizNeil FrickLisa FuentesMaria FuentesAdam and Dana FulghumNestor GagliardiDan, Alina, Matt and

Isa GagnonAna M. Galavis-DellepianeJeff GaleJennifer GarayThe Garcia Family Cristina GarciaOscar GarciaTeresa GarciaLisa Garcia-OrtizLina GasteluAna GaviriaEdgar GazeboAnn Geisler Nicolette GerritsChiara and Chad GesslerLastenia GomezLiliana GomezSandra GomezMarie GoldweberCarmen GonzalezDaniel GonzalezDavid GonzalezDiana GonzalezEduardo GonzalezElizabeth GonzalezFrank GonzalezSarah GonzalezSusan GonzalezTony GoodSandy GoodmanVivian GosselinChristine Gosselin LosadaJim and Hilary GottliebJim GrahamMaria GranadaHaley and Shannon GravesDiane GrayJane GreenbergRichard and Edye GreeneStephen and Robin GreeneMichael GreenlandTaylor GriffinWerner and Diane GrobDilia GrossmanBarbara GroszBernadette GuilbertStephen GulaMayra GullaDiane GumbinnerAlex GutierrezDiana GutierrezBen HaireNick and Jamie HammerBen HannanBrittany HarrellKimberly HarrellThomas HarringtonHartly PersonnelSebastian HeerFelicia HepburnCatalina HernandezMargine Peralta Hernandez

Raul HernandezRommel HernandezMarta HerreroDerek HodesMadi HoestenAl and Nancy HoffmanWhitney HollandSally HollanderMelissa HollowayCathy HolmesJason HolstineJess HoppeEileen horneCindy HowardCorey Ann HowardRich HreschakFabiola IbarraAlyda InoaSonia IrigoyenHarry IrizarryAmy JacksonJill JacobsLeslie Jacobson-FerraraRaj JagnananCarmelo JimenezJosefina JimenezNeil JohnsonJennifer JonesIrene Jose SalaHector and Kenia JuncoGeorgia JusticeK.R. Kilgore Holdings, LLCKyle KatPaula KayeSteve and Lori KayePaul KeelingGeri KeenanSusana KellerAngie KemmerPhyllis KennedyVess KerkeniakovKathy KernanAndrea KernerBrian and Charlene KesslerMitchel KesslerOmar KhurkoutJan KingMark KlagesTricia KleinbergScott KlineShari KlineRob KlostermeyerLen KolencikDerek KongPaula KoppelVanessa KoppelSridhar KorellaLaura KorkowskiBonita KormosJohn KrisselJames KristElizabeth KrohnDana KuhnMyriam LagomasinoOlga LagomasinoMiguel LagunaMelissa LalloChris LamannaLaura LancasterBob, Arline and

Bethany LaquerreAri LaskiFresnel LaurentDawn LeblancSherri LeiserDonna LemonLen Bujnicki and AssociatesMargarita Leon-CarmenateBernice LeporatiRyan LeventhalShanna LeventhalJoe and Sheryl LewisLou Anne LidermanWendi LipsichJay and Kim LittleMark LittleDaniel LiyIvonne LlosaRaul LockLynn LoganJesus M. Lopez

Julio LopezMarina LopezVictor LopezJerry and Linda LorenzDonna LoshusanNatalie LotyczEd and Nancy LoweyJamie LynchConstance C. LyonsAudrey MackShar-Ron MaddoxChristian MagnellAndrew and Madison MaingotPenny MaitnerJenny MajerEsperanza ManzurKhemraj MarajMara MaralitBen MargerumLori MargolisNellie MarieMarcelo MarimPatti MartinAndre MartinelliMagaly MartinezMichelle MartinezSaylin MartinezKarin MasLiane MascaroHarold MatiasMarion MauMin-Ae Jackie MayhewChristiana MayorgaFredy and Annie MazariegosNakia McCallumApril McCannKelly McCannKim McDonaldLili McFeelyNate McMillanZee McMillanCarol McNallyLily MedelAlejandro MejerFrances MelgaardGrant MelgaardTodd Melgaard, Jr. Angie MenaAntoinette MenaClaudia MenaErik MenaMilagros MendolaDennis MendozaLeslye MendozaSebastian MendozaVanessa MesonesJohnny and Roxanne MestreLourdes MetcalfeAndrea MientkiewiczMary Gabriela MigoyaJonathan MillerCrystal MindleyBob and Vickii MinnaughRosie MirabalMichael MishievAndrew MobayedBibi MohamedLauren MonteagudoLionel MontellsMaria MoraThe Morales FamilyChristopher MoralesJonathan MoralesRichard MoralesAngelitta MorencyJune MorettiFrances MoseleyMr. Stich Corp. Samuel MuckunlallBarbara Mujica MatiasAlina MuletThe Mural ProjectMaureen MurphyCassandra MusumeciSandra MuvdiRebecca NastasiaJonathan NavarroGeorge and Iris NegronMelanie NennigYamilet NievesJill Nisson

Christopher NixMyra NovakJeanette NunezJulio NunezJulius NunezKaren OddoneJennifer O'KuhnPeter OldburyAlfredo OlivaMabel OliveraGavin OlsonGisele OmoresRobin OrensteinBetts OrdelheideAndre OrdineErick OrtegaMaria OrtizValerie OrtizPeter and Patricia OstermanReyna OviolMaria Carola Padilla ParraBecky PadronChrissy PadronLea PadronManual PadronJon PageEstephanie PalacioManny PallangoPalm Beach BagelBarbara PanzerIsabel PascualSteven and Debbie PasqualeTrish PasqualeMary PaulGraciela PaulaAlfida PegueroLauren PelaezTiffany PenaMelanie PensakThais Penteado PerrellaLexus PereiraGeorge PereraThe Perez FamilyIvonne PerezAnette PerryKathleen PhillipsStephanie PhillipsPaula PicowMiriam PimentelNicole PimentelRene PimentelAmarilis PinaYakel PinaElda PinedaPita, Del Prado & MunozSeymour PolishookSy and Priscilla PolishookDina PopperCarlos PortaEthan PotterRobin PotterJohanna PovedaCecilia PradoDerek PrietoMary PrindleJames PurcellLourdes QuesadaFanny QuevedoFreeman QuickGladys QuinlanRichard and Carole QuinnAstrid QuintanillaRalf's Barber ShopPaul RaitanoAbigail RaizAmanda RamosMarta RamosCarlos RapaportRobert RapaportSamantha ReissMargarita RestrepoKing ReyesSally RicciAristides and Teresita RiveraErnesto RiveraJohn and Cindy RiveraWilliam RiveraAmy RobertsElisa RobbinJason Robbin Luis Robles

Solange R. RodriguesAdriana RodriguezBradley RodriguezCarmen RodriguezDanielle RodriguezKeren RodriguezMaria Cristina RodriguezPamela RodriguezMichael and Kimberly RohelleSherri RojhaniHarley RollinsEdil RomanMarty RomeoBarbara RondaJames RoofKay RoosaArlene RosadoDavid RosarioClifton and Greta RoseMelinda RosenthalCarolina RoseroHoward and Ingrid RoskinRachelle RubinWillliam RubinDavid RubinsteinAndres RuizHiram RuizMaria Carolina RuizRey RuizRoberto and Roxana RuizVanessa RuizJennifer RuthDeanne SaavedraBrenda SalagadoThe Salermo FamilyAl and Charlotte SalzmanJacob SanchezJulie SanchezLourdes SanchezMaribel SanchezMelanie SanchezOscar SanchezPatria SanchezRhina SanchezVictor C. and

Teresita V. SanchezRani SanicharaSylvia SanniaRenee SansaricqMaria E. SantaellaRodence SaintilGuisella SantoDomingoJonathan Sargenton`Denise SchacherColleen SchiffDenise SchneiderRachelle SchneiderBella SchusterJoyce SchusterJudy SchwartzRobert and Sally SchwartzJeff SchorrManju SeeramJessica SeidenCharlene SerranoCarlos SevillaSemillaRenata SenaRonald F. SevcikTaijpaul SharmaJohn and Magdalena ShawEd and Harriet SheaJasmine SheddenIrving and JoAnne Shulkes Naomi SieglerMichelle SilvermanJeffrey SilversteinScarlett SilwanyKeith and BJ SimmonsTeri SingerRadica SinghMarianne SioliScott SklaeNorman and Audrey SkoppNancy and Frank SlodaresThe Smith FamilyJohn and Nancy SmithSteven and Carol SmithRosario SolaresBrian SolishStaci Solomon

Marisel SordoJudith SorensenEmily SosaJude SosaElsa Maria Sosa-HernandezJack and Phyllis SpearSpeedy Eagle Trucking, Inc.Heather SpencerMichael StacksJoan E. StantonJeannine StemmerSuzanne StewartSheryl StiefelCheryl StolowLaura StrehleEvelyn SuazoSandra SueirasR. SwentekSusan SwindleRichard and Marilyn SwoiskinChristina TanoLaura TantonAmanda TanzerHenry TanzerMichelle TanzerTaylor & Griffith PAClaire TaylorWalter and Mary TaylorLarry TealSteve TejiramJessica TelchinMarc TendlerBradford ThomasNicole TichauerPhilip and Siobhan TomazicArelis TorresJuana TorresTrimline Design CenterYurika TsujiKurt TuckettEllen TurkoSamantha UribeYesenia ValdesAl and Rosa ValdezNataly Valencia MonteroAngela ValentinKelly VallejoClaudia Van EssenFrancisco and Maria VaronaZiemely VazquezCharles VedderMitzy VegaMaritza VelascoJacqueline VeraKim VernonDaniel VillegasMaria Vina-RodriguezCarlos VivancoLucy VivesSussette VizcayaSusan WaleskiClint WalkerJerrold and Francine WalkerJerry WallaceVincent WargerEllen WebbSavannah WeissMegan WeilHeather WeinbrumWest Flagler Travel AgencyScott and Jo WestonRandi WinterJack WintersLisa WiseMike WisniewskiDan WolfeArt WoodJill Wood Mamie WynnBeverly YagerKeith YoungswickIsaac ZavalaIsaiah ZavalaLarry ZavalaLarry Zavala, Jr. Philip ZerbeAlina ZimbelmannSharon ZitrinJeanean Zunk

In Memory of and Donor Recognition:

EULALIA CASTANOThe Castano/Arrebola Family

CRAIG WATTSThe Watts/Thomas Family

Pain is bright red

It tastes like sour candy

It smells like a hospital

And reminds me of my surgery

It sounds like an ambulance

Pain makes me feel like staying in bed

Welcome to Our NewStaff Member

Tory Gilliam is the new Development Assistantfor the Florida Hemophilia Association. He is arecent graduate of the University of Miami witha degree in Marketing. Prior to joining theFlorida Hemophilia Association, Tory worked atthe Frost School of Music at UM in the Office of

Development and Special Events, planning fundraising events,writing grants and managing local marketing campaigns.

Tory Gilliam

Welcome to Our NewBoard Member

Myra is the newest member of the Board ofDirectors. She is an Intelligence Officer with theFlorida Army National Guard as well as anactive duty veteran of the Army. Prior to joiningthe Board of Directors, Myra was involved inmany FHA events and served as a team captain

for the 2012 Hemophilia Walk in the Jungle.

Myra Novak

ANF Group, Inc.

Gallo Herbert Lebolo

JWR Construction Services

Poem submitted byJustin Brigman

7WINTER 2013 • LIFELINE

NEW DATE! NEW LOCATION!

September 6 – 8, 2013Embassy Suites West Palm Beach

1601 Belvedere Road, West Palm Beach, FL 33409

Stay tuned for more information!

SAVE THE DATE • SAVE THE DATE • SAVE THE DATE • SAVE THE DATE

30th Annual Family Education Symposium

10 WINTER 2013 • LIFELINE

NHF News • January 2013

Progress Continues in Hemophilia B Gene Therapy Study

n December 2012, investigators from the Memphis, TN-based St. Jude Children’sResearch Hospital provided the latest progress in a breakthrough hemophilia B gene

therapy study that began in 2010. A single intravenous injection of this gene therapy intopatients with hemophilia B activates the production of small amounts of factor IX (FIX), thedeficient protein. The report was presented at the 54th Annual Meeting and Exposition of theAmerican Society of Hematology (ASH), held December 8-11, 2012, in Atlanta, GA.

Researchers from St. Jude and the University College London (UCL) Cancer Institutehave successfully used adeno-associated viruses (AAVs) as delivery vehicles, or vectors, to carrythe genes that trigger the production of the factor IX (FIX) protein, which is lacking in peoplewith hemophilia B. AAVs deliver the genetic material into living cells to sustain therapeuticeffect without causing disease or triggering significant immune responses. In addition, theyoften target liver cells, which manufacture FIX.

Investigators presented data at the ASH conference on the first eight patients enrolled inthe study, all of whom generated increased levels of FIX. Three of the patients needed fewerinfusions of FIX concentrates, the other five no longer needed any treatment.

Overall, FIX levels, which were virtually nonexistent in these patients before the study,increased from 1%-6% after receiving the therapy. “Anything over 1 percent will improve theclinical course of the patient” said Arthur Nienhuis, MD, a member of St. Jude’s Departmentof Hematology whose lab helped develop the therapy method. “Clearly, the treatment doeswork.”

The researchers envision eventually testing the therapy on children. They hope to speedup the process by which the vector is created. For the trial, it took about six weeks to createenough vector for the eight study subjects. Studies by other researchers at other institutions areneeded to duplicate the results on a larger number of people.

Source: TheRepublic.com, December 11, 2012

I

Laser Therapy for Gum DiseaseBenefits Bleeding DisordersPatients

Texas periodontist is championing a laser procedure to correct chronicperiodontitis, inflammation in the gums as a result of dental plaque.

Chronic periodontitis is a common condition, affecting approximately half ofU.S. adults. If untreated, it can lead to tooth loss. Traditional treatment is invasive,expensive and time consuming, requiring the cutting away of sections of the gumsto access the area for cleaning and bone regeneration. But Ahmed El-Halaby, DDS,MSD, of Pinnacle Implants & Periodontics prefers a simpler approach known aslaser periodontal therapy.

“With the laser, the way it works is you apply the laser to the diseased pocketsof the teeth, and the laser can tell the difference between healthy tissue and diseasedtissue,” said Halaby. This is in contrast to the older “cut-and-suture method,” whichcan actually lead to the removal of healthy tissue, he said.

Halaby sees particular advantages of laser periodontal therapy for people withbleeding disorders. By using laser-based therapy, an individual with a bleedingdisorder could forgo the invasive procedures and prolonged bleeding oftenassociated with dental care. Halaby explained that the laser coagulates the blood,further minimizing the risk of bleeding.

Decisions regarding oral surgery or any other medical procedures that may beassociated with excessive bleeding should be made in close consultation with theprofessional staff at your hemophilia treatment center.

Source: News-Journal.com, November 29, 2012

A

Continúan los avances en el estudiode la terapia génica para eltratamiento de la hemofilia B

n diciembre de 2012, investigadores del St. Jude Children’s Research Hospital, enMemphis, TN, informaron del más reciente avance en un importante estudio de terapia

génica para el tratamiento de la hemofilia B que comenzó en el 2010. Una sola inyecciónintravenosa de dicha terapia génica en pacientes con hemofilia B activa la producción depequeñas cantidades de factor IX (FIX), que es la proteína deficiente. El informe se presentó enla 54a Reunión y Exposición Anual de la Sociedad Estadounidense de Hematología (ASH, porsus siglas en inglés), que se celebró del 8 al 11 de diciembre, en Atlanta, GA.

Los investigadores del St. Jude y del University College London (UCL) Cancer Institutehan usado con éxito virus adenoasociados (AAV, por sus siglas en inglés) como vehículostransportadores, o vectores, para llevar los genes que desencadenan la producción de laproteína del factor IX (FIX), que es la proteína que les falta a las personas con hemofilia B. LosAAV llevan el material genético dentro de las células vivas para mantener el efecto terapéutico sinproducir enfermedad ni desencadenar respuestas inmunitarias importantes. Además, estos virus amenudo tienen como objetivo las células hepáticas, las cuales producen el FIX.

En la conferencia de la ASH, los investigadores presentaron los datos sobre los primerosocho pacientes inscritos en el estudio, todos los cuales produjeron mayores concentraciones delFIX. Tres de los pacientes necesitaron menos infusiones de concentrados del FIX, y los otroscinco ya no necesitaron ningún tratamiento.

En términos generales, las concentraciones del FIX, las cuales eran prácticamenteinexistentes en estos pacientes antes del estudio, aumentaron entre 1% y 6% después de recibirla terapia. “Cualquier aumento por encima del 1% mejorará el curso clínico del paciente”,expresó el Dr. Arthur Nienhuis, miembro del Departamento de Hematología del Hospital St.Jude cuyo laboratorio ayudó a desarrollar el método terapéutico. “Evidentemente, eltratamiento funciona”.

Los investigadores prevén en un futuro probar la terapia en niños. Esperan acelerar elproceso mediante el cual se crea el vector. Para el ensayo, tomó alrededor de seis semanas paracrear suficiente vector para los ocho participantes en el estudio. Se necesitan estudios por parte deotros investigadores en otras instituciones para repetir los resultados en un número mayor depersonas.

Fuente: TheRepublic.com, 11 de diciembre de 2012

E

La terapia con láser para laenfermedad periodontalbeneficia a los pacientes contrastornos hemorrágicos

n periodoncista de Texas está abogando por un procedimiento conláser para corregir la periodontitis crónica, es decir, la inflamación de

las encías a consecuencia de la placa dental.La periodontitis crónica es un padecimiento frecuente que afecta

aproximadamente a la mitad de los adultos en los EE. UU. Si no se trata,puede llevar a la pérdida de piezas dentales. El tratamiento tradicional escruento, costoso y toma tiempo; es necesario cortar zonas de las encías paratener acceso al área con el fin de limpiar y permitir la regeneración del hueso.Pero el Dr. Ahmed El-Halaby, DDS, MSD, de Pinnacle Implants &Periodontics prefiere un enfoque más simple conocido como terapiaperiodontal con láser.

“Con el láser, la manera en que funciona es que se aplica el láser en lasbolsas periodontales afectadas, y el láser puede diferenciar entre el tejido sanoy el tejido enfermo”, indicó Halaby. También dijo que esto se diferencia delantiguo “método de corte y sutura”, que de hecho puede llevar a que seelimine tejido sano.

Halaby encuentra ventajas específicas de la terapia periodontal con láserpara las personas que padecen de trastornos hemorrágicos. Al utilizar laterapia con láser, la persona con trastorno hemorrágico puede evitar losprocedimientos invasivos y la hemorragia prolongada que con frecuencia seasocia a los tratamientos dentales. Halaby explicó que el láser coagula lasangre, lo que disminuye aún más el riesgo de sangrado.

Las decisiones acerca de la cirugía bucal o cualquier otro procedimientomédico que puede estar asociado a un sangrado excesivo deben tomarse trasconsultar de manera minuciosa con el personal profesional del centro para eltratamiento de la hemofilia al que usted asiste.

Fuente: News-Journal.com, 29 de noviembre de 2012

U

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

P

Sacred Heart Pediatric

Hemophilia Program,

ensacola

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 LocationAlex’s Place at Sylvester1475 NW 12th AvenueSuite C103Miami, FL 33136Phone: (305) 689-7210

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

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

Newsletter Committee:

Debbi Adamkin, Maria Rubin, Denise Schacher, Linda Thomas

Design and Production:

Group M, Advertising & Design305-235-2538

Florida Hemophilia Association Office(888) 880-8330

PresidentBarbie Arrebola

Vice PresidentJon Salk

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

National Hemophilia Foundation(800) 424-2634

Hemophilia Federation

(800) 230-9797

LA KelleyCommunications, Inc.Free resource material on Hemophilia(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

11WINTER 2013 • 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

www.hemophilia.org/walkParticipate. Volunteer. Donate.

3rd Annual“Walk in the Jungle”

Saturday,

May 4, 2013

Jungle Island