The Official Newsletter of the Florida Hemophilia Association

Executively SpeakingPage 2

NHF NewsPage 5

Community CornerPage 7, 10, 13

FHA Resource CenterPage 19

WINTER 2015

INSIDE

Men’s Program-HollywoodMarch 15

5th Annual Walk in the JungleMay 2

Dolphin Day CampJune 12June 18

Boggy CreekJuly 6-11

32nd Annual Family EducationSymposiumJuly 16-19

Teen and Young Adult RetreatJuly 31-August 2

“SAVE THE DATE”

SATURDAY,MAY 2, 2015Jungle Island

For questions, contact FHA at (305) 235-0717 or email us at walk@floridahemophilia.org

Registration/Check-In: 7:00amWalk Start Time: 8:30am

Please consider making a donation this month to our Walk in order to celebrate and honor

all those with bleeding disorders

5th Annual Walk in the Jungle

ExecutivelySpeakingHappy New Year! We’re off to a great start for2015 with some exciting new programming foryou and your family. Please check out thewebsite for upcoming programs and activitiesthat we will be offering throughout the year.

Our biggest fund-raiser of the year is just aroundthe corner! Now in its fifth year, the AnnualWalk in the Jungle is on Saturday, May 2 atJungle Island. So lace up your tennis shoes and

register your team and get started on your fund-raising goal! Thewalk website is already up and running so register your team today. Idid! If you’re not ready to start up your own team, you can participatein ours by joining the Florida Hemophilia Association Blood Drops.The walk is an activity that families and people of all ages can enjoy.It’s also proven to be our biggest fund-raiser that affords us theopportunity to provide you with annual programs such as, the FamilyEducation Symposium, Mother’s Brunch and Dolphin Day Camp.Through events like our walk, golf tournament and Volley for Cure wecontinue to come together as a community and educate the generalpublic about bleeding disorders.

Last but certainly not least, we would like to thank everyone whosupported FHA in 2014. We couldn’t have done it without yoursupport! You made it possible for us to continue our mission of servingthe bleeding disorder community in Florida and providing programsand services throughout the course of the year. Below is a chart thatdescribes how funds were distributed for 2014 and a list thathighlights the many individuals, corporations, and donors whosupported our worthwhile cause.

I look forward to seeing you all soon!

Debbi AdamkinFHA Executive Director

MensajeEjecutivoFeliz Año Nuevo! Empezamos con un gran comienzo para el 2015 con unanueva programación emocionante para usted y su familia. Por favor,consulte el sitio web para ver los próximos eventos y actividades quetendremos durante todo este año.

Nuestro mayor evento para recaudar fondos del año está a la vuelta dela esquina! Ahora en su quinto año, la Caminata Anual ‘en la Selva’ es elsábado 2 de mayo en Jungle Island. Así que póngase sus zapatosdeportivos, registren a su equipo y empiecen a trabajar para alcanzar sumeta de recaudación de fondos! El sitio web ya está funcionando demanera que pueden registrar su equipo hoy. Yo ya lo hice! Si usted noestá listo para crear su propio equipo, puede participar en el nuestrouniéndose al equipo ‘Blood Drops’ de la Asociación de Hemofilia de laFlorida. La caminata es una actividad que las familias y personas de todaslas edades pueden disfrutar. También ha demostrado ser nuestro mayorevento para recaudador fondos que nos brinda la oportunidad deofrecerle programas anuales, tales como, el Simposio de EducaciónFamiliar, Almuerzo para las Madres y el Campamento de Dia de Delfines.A través de eventos como nuestra caminata, el torneo de golf y ‘Volley fora Cure’ nos seguimos uniendo como una comunidad y educamos alpúblico sobre enfermedades sanguíneas.

Por último, pero no menos importante, nos gustaría dar las gracias atodos los que apoyaron a la FHA en el 2014. No pudiéramos haberlohecho sin su apoyo! Ustedes han hecho posible que nosotroscontinuáramos nuestra misión de servir a la comunidad conenfermedades de sangre en la Florida y ofrecerles programas y serviciosa lo largo de todo el año. A continuación se muestra una tabla quedescribe cómo se distribuyeron los fondos en el 2014 y una lista de losmuchos individuos, corporaciones y donantes que apoyaron nuestrabenemérita causa.

Espero verlos a todos pronto!

Debbi AdamkinDirectora Ejecutiva de FHA

2 WINTER 2015 • LIFELINE

ALLOCATION OF FUNDS

3WINTER 2015 • LIFELINE

Thank You for Your GenerosityFHA gratefully acknowledges our donors who have so generously contributed to us in 2014

$25,000 and OverBaxter BayerPfizer

$15,000 - $24,999Biogen IdecCSL BehringNovo Nordisk

$10,000 - $14,999CVS CaremarkOctapharma

$5,000 - $9,999AccredoBioRxCoram Specialty Infusion

ServicesEmergent BioSolutionsGrifols Hemophilia Alliance FoundationKedrion BiopharmaWalgreen’s Infusion Services

$1,000 - $4,999At Home Infusion ServiceJorge & Diana AzorBob & Beth CarlinElise BostonCommunity Bank of BrowardCSL Behring Foundation Matrix HealthTJX Foundation Soleo HealthWingmen FoundationJoseph Ziegler

$100 - $999211 BrowardStacy AckerDebbi AdamkinIris AdlerAdvanced Service Solutions,

Inc.Karen AlbaAllstar Auto Body Inc.Alma FoundationIvette Alvarado-LeidermanJinniva AlvarezAmerican Elite Health GroupEllen AmigoBarney AmosKathleen AndersenAtlas Metal Industries, Inc.Joseph BaechlerRay BaileyGhada BalloutBank of America FoundationAndrea BarattiniPeter BarkenValerie BarnhartVeronica BarraganAna Maria BarrantesDr. Luis BarrerasIlene & Stan BarshayMichael BartlettBelen Jesuit Prep School

Homeroon 8-4Sally BerenzweigMargaret BerndtRobert BlackEnrique BlancoJanet BlitzBlue Wave Communications BrightstarBuchanan Ingersoll & Rooney Denis CaldoraTerry CampbellRebecca Carballo

Barbara CastanoPaul & Daniela CepedaVal & Francine CeruttiThe Cesta Family CityReach Technologies, Inc.Leslie ClarkTimothy ClarkCommunity Bank of FloridaDavid ConfessorSabrina & Madison CookeThomas CoonRafael & Michele CoquisDominic CozzolinoKen CrandallSteven DavisJames DiLorenzoCharles F. DionneDr. Madelyn DonesMaria DonesAngel DonesJack DonofrioAlberto DosalDr. Henry SharpiroJoan & Jay EichelCésar ElizondoEmbassy Suites West Palm

BeachJanelle EspinosaNicky EspinosaDean EspositoRoni FaermanClaudine FaiferAndy FernandezBruce FletcherSharella FlowersNatalia FonsecaBarbara FormanThe Frallicciardi FamilyFraternidad Phi Delta GammaSidney FreedlanNeil FrickRandy FurbyJeff GaleYamida GarciaJaime GarciaEdward GilbertDenise GimbelMarilyn & Norm GoldbergValeria GomesMarvin GreenbergStephen & Joan GreenfieldGroup M Advertising & DesignDanielle & Tony GuzzettaHadley & Lyden, Inc.Judy HasenaurAlicia HathawayJenny HellmannCarlos HernandezMarta HerreroRonald HoffmannRich HreschakJessica HughesIndependence Title Indian Princess Mighty Aztec

TribeLilian IzaguirrreOmar JasauiJohn G. Espinosa Financial

GroupEddie JonesMarion JuddMichele & Barry KatesRenee KelleyShari KlineRob KlostermeyerChristos KostelidisRaghad KoutoubyRick KrisselBarbara KruseDana Kuhn

Ashley & Erika LauAdriana LavanKelly LavisPaul LeboffeSherri LeiserWilliam LeoneLisa LeventhalSteven LevinThe Liuzzi FamilyLuis LizarragaShelby MadeirosFlorencia MaggiDaniel R. Maier, P.A.David MaingotMartin MalagaCynthia MalambriTodd MaplesFelipe MaramgonGabriela MarquezLeanne MascaroMaria McDonaldJeffery McFallRhonda Lynn McNielCraig MearsDaniel MenaPeter MercatiliMichelle MeyerMichael L. Feinstein, PAMicrosoft Joseph MilanaCarol & Hal MilsteinBob & Vicki MinnaughDon & Gail MitznerAndrew MobayedMichelle MojiaCarmen Claudia MolinaJose MolinaNelly MontijoNereida MontijoSharon MorgansternMorgan-Weiss, LLCMosquito NixYadira MunozNational Powerboats LLCTony & Paola NewellOcean Chiropractic & Health

Center, Inc.Nanette O'DonnellJonathan OhebshalomPeter OldburyLiliana Olivares de MaechlerBetsy OliveiraPeter O'MalleyElizabeth OrdelheideManuel OrosaMaria Ortiz CarrionOverseas GroupJohn ParlerJeff ParrishEva PateHiren PatelSky PatrolLeslie & Phil PaulGreg & Alex PensakVirgilio PensoAlex PerezLuciana PerialesPilates of BocaVito PisaniPlaza Research Corp. Paul PolitoSixta PortalatinBeatriz PreschelPresidente SupermarketChris RicciDan & Katy RicciEvelyn RodbergHarley RollinsJennifer RoselliRandi & Len Rothenberg

Kari RubenJamie RubinYadhyra SabaterIra & Eileen SalkRobyn & Jon SalkKen & Leslie SalkSample Czar Inc. Miriam SanchezMaribel SanchezAdriana SanchezThe Sanchez FamilyArlene SantacroceMelanie SatiskyMuriel ScemlaMichael SchlesingerJeanine SchmidtWendy SchreckShutts & Bowen Syma SilvermanSteven & Carol SmithKathy SmouseStaci Solomon Heather M. SpencerRobert & Lisa St. GermainJessica SwannMark TaylorRomeena TejiramMelinda TerritorialeLinda & Rick ThomasChristian ThomsonBill ToliaMarilyn & Shawn TolleyDavid ToppTrend by Sebastien JamesSandi & Ed TuckerRosita UrbinaAlbert ValeraCarlos VaraAnibal Vega BorgesMaurice WaldmanVirginia & Ronnie WalkerJerry & Jean WallaceMike WalshEd WassmerRalf WegerHeather WeinbrumMax WeintraubScott & Jo WestonKen WiesenfeldScott WiseZen BuilderThe Ziccardi FamilyZuckerman Brothers, Inc.

$1 - $99Paulette AaronsonAna AcevedoAcoustical Interiors, Inc.Athina AdelsteinSabrina Sayonee AditMaria AdriazolaMarlo AgoldDavid AguadoAimee AguiarJaneth AguileraYaime AlarconEdgar AlarconGrey AlbaAura AlbaFrank AlbarracinVeronica AlbrightMileva AlcantaraMohani AldanaLynn AlexanderKaren AlfsonEuza AllenRamon M. AlonsoOlga AlonsoVivian Alvarez

Steven AmadorRoxana AmbrosiniThe Amore FamilyAlexander AnchiaYaremy AnchiaAmy AndermanGloria AndinoMiguelita AndinoAnonymousFrancis AracenaPatricio AranaElizabeth ArangoitiaNaila ArceMichelle ArchambaultJessica ArdenteReinaldo Ramon Areu, Jr. Luz AricapeSandy ArioliJuan AroixLawrence & Pamela AronowJackie ArroyoAldo AsseoMariangely AtilesMaria AvendanoErnie AvinoJorge AzelOswald AzuaStuart BarmenShannon BarnesNancy BarnhartKeosha BarrettCarrie BarrollDaniel BeaudryEthan BeckerSamara BeckerJody BeckerSusan BellShari BenderMarnie BendsChandni BenimadhuLorena BenitezSusan BenjosephCherie BenjosephErika BerlingeriRafael BermudoBridget BerryEdwin BetancourtJessica BethuneJorge & Cristy BlancoRuth BlitzShelley BlumJessica BorkKendra BottomsJennifer BowersClaudia BrabataKenny BrehmSheila BrooksRay BroughtonDawn BroughtonElizabeth BrownAlex BrunoKevin BuchananMichele BuchananLina BuitragoElaine BurdockDavid BurgeDavid BurgesonChristopher BugioWellamo BurkheadBernard BushellJairo CabreraValeria CaicedoDominique CajusteGloria Maria CalderonRaul CalderonAna CaleroDick & Debbie Campbello

Lizzette CampoJessica CamuffoMercy CanasMelissa CanoTina CapeloJohn & Carmen CardenBarbara CarmichaelRafael CarneroArmando CarneroJose Antonio CarneroAndrea CarneroXiomara CarrascoThomas H. CarrollLenore CartierAda CarvajalFania CasanuevaJeffrey CaspiReina CastanedaSteve CasterElisa A. CastroJennifer CastroJairo CepedaMarge CestaJulie CestaDeanna ChandlerBlanca ChoyBrianna CidIrma ClarkAllen ColemanWendy Colli Justin & Linda ColonAshley CombsSibyl CorleyMercedes CorreaLinda & Richard CostaFerchie CovasMargarita CruzNiurka CruzadaAlex CuestaRenay CummingsKeith CunninghamRossana Cutolo GillNancy DanversJaivon DarbyTracy Darney-PavlikJavier DavalosEduardo de BoyrieDianne de la CruzJohn de la CruzAlexandra De La CruzAndy de la FuenteJohnny de la FuenteMaria de la FuenteMaylen de la FuenteIrina De La OsaCarlos de la Puente AlfaroMarjorie De PinhoLuis De VelascoElisabeth DeakinMike DeemMilly DejesusPedro DelgadoDeborah DelvaMichael DelvalleNiccolo DelzoppoLeonard & Ruth DenbinAmy DenkerDeland DentYamin DharamsiXander DiazGerson DiazDanny DominguezSharon DonohueAl & Irene DorazioLinda DubeTim DuncanLaura Ebbage

(Continue page 4)

4 WINTER 2015 • LIFELINE

Libis ElietteStephen EngasserChad EriksenCarolina & Manny EscobioPatricia Espinosa ThomsonLeslie EspositoSofia EstradaEthan FaermanDawn FairclothJose & Daysi FardalesAlicia FarinasFaster & Easier Computer

ServicesDavid FeatherNelly D. FebresMark FeddenJoy FeingoldHoward FeldmanLinda FelicioZeida FernandezLuis Wilfredo FernandezKarina FernandezJorge FernandezNiurka FerretDrew FinkCathy FitzpatrickB. Rachelle FowlerAdam FractenbergLee FriedmanCristy GarciaBetty GarciaAlberto GarciaCarrietta GaudioTracy GermaniLaura GibsonCindy Gil-AvilaTory GilliamNancy GinartTalia GoicoecheaMarlen GomezLily GomezAna GomezCarmen GomezJorge GomezAlain GonzalezCarlos GonzalezCarmen GonzalezDiana Gonzalez Gus & Maria GonzalezPatricia GonzalezCorey GonzalezWilfredo GonzalezMaria GranadaJanice GraulauDebbie GreenFrederick GreenRichard & Edye GreeneJeremy GriffinCJ GrgisbyLuigi GrijalvaByron GrijalvaHarold GrimaldoCathy GrossbergGuaranty Commercial Title, Inc. Mauricio GuizarStephen GulaMonikah GuptaDanielle & Tony GuzzettaPatrick HackshawErik HalvorssenBelen HannanJoe HarlowJames HarrisonTy & Abby HartRosemary HartiganHartly Personnel ServicesStuart HegsethAmanda HellmannMonica HerbstmanArlene HernandezMaria & Frank HernandezVivian HernandezCarlos HernandezEva HernandezDaniela HerreraIrma Herrera

Roberto HerreroMarcelo HerksovitzMaria HidaldoIsley HidalgoDerek HodesElizabeth HodginsLarry HoffmanAl & Nancy HoffmanCathy HolmesJennifer HornRaymond HudgensGerald IrwinAna IsazaTricia JacksonSham JagnananBarbara JenkinsPatricia JimenezJosefina JimenezBillie JimenezNancy JimenezDahlia JohnsonDarrelle JohnsonStacey JoinerWendy JordanAllison JordanMadeline KahanDavid KahnBob & Marcia KaplanDenise KaufmanPaula KayeAngela KemmerGloria H. KepelovBrian KesslerMitchel KesslerMarie KhouryOmar KhurkoutAlfonso KlawansJoe KleiberJennifer KnightMayra KnowlesJon KnowlesSarah KoppLawrence KorbenBonita KormosAndy KraichLexi KrautmanThe Krissel FamilyAnn KrukAlicia KuppensAmy KutellMyriam LagomasinoAnne Lapidos TindelRebekah LaponDarcy LawyerRene LebronHarry & Joanne LeiserCharlotte LibovJustin LindhorstJames & Sheryl LinnLittle Fish MediaAmir LittmanClaus LitzbarskiRobert LivingstonRodolfo LlanesMonica LoayzaJoe LoBelloElliana LoperaDiana LopezEvelyn LopezJennifer LopezVictor LopezMariejacq LopezSanta LopezAdam LopezMichael LopezAlina Lopez-CastroAna Lorenzo Jose LorenzoDonna Loshusan LemonNatalie LotyczDiana LouzadoEdward LubawskiMrs. LufberySaudhi LugoLindsey MacgruerCindy Macrafic

Lisa MagraneDavid MantilaDanielle MareseThomas MarkeyGina MarliebJannet MarquezDonna MarshMartin MartinezIngrid MartinezSelba MartinezMagaly MartinezLauren MartinoKevin MarulandaSammy MatthewsThe Matus FamilyLiliana MatznickJames McCoyLiliana McFeelyThomas & Ursula McGradyHaley McKennaKaren McMichealEric McRoyLarie MearsIvette MedinaKaren MeinersDaniela MembrenoClaudia MenaAngie MenaAntoinette MenaErik Jeramy MenaErika MenaMilagros MendolaElsa & Fernando MendozaJeovanny MeraRandi MeshelVanessa MesonesDea MesquitaDaniel & Judith MielnickiStephanie MiginioJanice MillerLesli MillerVicki MobleyMaria MolinaElizabeth MolinareJeff MonaghanAmanda MontanerAna MontenegroDulce Montes De OcaMilybet Montijo-CepedaChristina MooerKim MooerAngela MooreDania MoralesAlbania MoralesRichard MoralesAndrea MoralesJonathan MoralesCarlos MoretaSergio MoretaMrs. MoronDebbie MoroneyPaula & Paul MorrowDr. Lawrence MosesAlina MuletAngie MuñozPamela MurphyWilliam J. Murphy, Jr.Elaina NaplesAna NavarroJonathan NavarroConstance & Charles Neely Debbie NeffGeorge & Iris NegronCarlos Juan NegronSandy NievesUrsula NievesJamiy NievesSol NievesJuana NoriegaDeanna NorlingMichael NourseMonica NunezJulio NunezBlanca Nunez DeasonAna ObandoJoan O'Brien

Jennifer O'KuhnElyssa OlginNicolas OlivasSuzy OliveiraGleydiane OliveiraJose OliveiraSandra OlmedaBetty O'NealEdith M. Ortega, MDAngelica OrtizAnelsa OrtizTabitha OsorioEvelyn OsterweilEdnilean PaduaeAleax PalenThomas PalenSusan ParceThomas ParkerMaria del Carmen PasosShilpa PatelTony PatinoEnrique PazoMaria PedrajoTiffany PenaYonnira PeraltaJaneth PeraltaPenni PerezIsrael PerezTania PerezAlejandro PerezLiz PerezKarla PerezHernando PerezReinaldo PerezIvonne Perez-SuarezBarbara PerinoMauricio PerryKaren J. PerryKimberly PhiloIvette PicadoCarolina PicoRubens J. Pierami NetaMiriam PimentelKeysel PimentelRene PimentelJames & Dalia PlattSeymour PolishookPops Corn, Inc.Leo PoyntonJuan PozoNancy PratherLaura PratherHugh PratherValerie PrescottDebbyann PrescottJannet PrussingCleopatra PuertoJoseph PuglieseMargarita QuinterosAbigail RaizPedro RamirezElba RamierzElvira RamirezAna RamosAmanda RamosScott RamseyerCeleste Reidy MatosAlexandra RendonSanta ReynosoSally RicciBrunilda RivasFrancisca RivasMara RiveraAna RiveraEmma RiveraEmmery & Emmy RiveraErnesto RiveraJaime RiveraMiriam RiveraMonica RiveraJashira RiveraMaria Rivera-AlbertElisbel Rivero

Aristedes RiveroLisette RiveroNanette RiveroStefano RizzoLaura RobbinsJessica RobertsDaphney RobinsonAlzeth RobinsonNereida RodriguezOxalis RodriguezEdwin RodriguezCecilia RodriguezOraymi RodriguezLia RodriguezCrystal RodriguezAngel & Louise RojasGianina RojasHilary RomanEneida RomanDiana RomeroMarty RomeroEduardo RoqueClifton & Greta RoseHerbert RosenMelinda RosenthalMichael RosenthalIngrid RoskinNancy RosseroEve RostranDawn RotelliniLeslie RoyGarrett RoyalBarry RubinSteve RubinWilliam RubinAngie RuilobaJessica RuizAndres RuizJulio RuizKim RuoffAnthony RusselloMarta SaavedraJose SaavedraRamon SalasRaul SalgadoJustin Salk Albert SalzmanSol SananesAdriana SanchezLibia SanchezMaria SanchezKatarina SanchezRanie SanicharaRenee SansaricqMaria E. SantaellaXenia & Pedro SantanaHendry SantanaCarolina SantangeloJacqueline SantiagoMarcia SarpiCraig SchmidtJeff SchorrErlene SchwambornRichard SeamanJessica SeidenLivy SeidenRandy SeltzAlicia SeminarioCarmen SeminarioJavier SeminarioMarly SgambattiLorraine ShapiroJohn & Maggie ShawSharonda ShawHarriet & Ed SheaClaudia ShirleyCarmen ShiromaCasey ShoreNorm & Karen ShulmanCarmen SierraMichelle SilvermanTeri SingerRadica SinghKatherine SissonNancy SlodarzAuxi Slute

Robert SluteCharles SmithIvan SnyderHarper SnyderMark W. SokoloskiRosario SolaresClaudia SolerRoberto SolerSuhelen SolorzanoMarisel SordoPam SossiHaydee SotoPhyllis SpearDanielle SquiresYvonne SteinAndrew StevenHeather StewartIris StraubeWilliam & Susan StyborskiYosleidy SuarezEvelyn SuazoYasmin SumarGwen SwerdloffRichard SwoiskinAna TamaraEvan Teitelbaum Steve TejiramTel-Aviv Texaco Jessica TelchinUrsula ThomasDayne ThompsonAntonio TiradoToro PlusBarbara TorresElizabeth TorresRaul TrilloMarco TrimarchiNena TrottogottTami TrujilloKurt TuckettJennifer UjuetaJoseph UltimoMark Umphrey IIZameer UpadhyaKenneth UrrutiaDaymi ValdesNicholas ValdesRoberto Valdes SantiagoAl & Rosa ValdezKelly VallejoEmily VallejoChristine VandenbergFrank & Wendy VannMayra VarelaConsuelo Varela De La FlorAngel VegaEllie VelazquezRaul VergaraCristina VergerJose VersaceCyndi ViggianiMaria VillasisCanele VillaurrutiaMaria Vina-RodriguezCesar VinuezaTania VizcarrondoMarjorie VizcayaFarristine Wade-EnglishPatricia WalshLeonard WarburtonRosa WarburtonDonna WatsonBeth WattsMartin WeinbaumDanielle WeiselbergSavannah WeissJim WhiteEllen WhitePolett WilliamsKim WongKenneth WrightHilda ZayasJanelle ZayasLuz ZuluagaAlfred Zweig

NHF News • WINTER 2015

Plant-Based Inhibitor Therapy Continues to Evolve

cientists from the University of Florida in Gainesville (UF-G) and theUniversity of Pennsylvania (U-Penn) continue to investigate an

experimental, plant cell-based approach to preventing inhibitors and allergicreactions (anaphylaxis) to clotting factor therapies in people with hemophilia. Anupdate on their progress was published online, December 16, 2014, in ScientificAmerican, a division of Nature America, Inc.

Lead investigator Henry Daniell, PhD, director of translational research at the U-Penn School of Dental Medicine, and Roland W. Herzog, PhD, a molecularbiologist at UF-G, have, for several years, been working on a technique thatinvolves encapsulating an orally administered “tolerance-inducing protein” suchas factor IX (FIX) within plant cell walls. When ingested, the bio-encapsulatedprotein safely travels through the stomach before reaching the small intestines.The plant cell wall shields the FIX from being prematurely broken down bystomach acid. Eventually, microorganisms eat away the cell wall, graduallyreleasing the protein.

Building on earlier studies (2010) that successfully used bioengineered tobaccoplant cells to prevent inhibitors and anaphylaxis in mice with hemophilia B (FIXdeficiency), Daniell and Herzog are now turning to freeze-dried lettuce leaf cellsengineered to trigger a high concentration of FIX. Each lettuce leaf cell contains

approximately 10,000 chloroplasts, each structured in such a way to hold verylarge volumes of the FIX protein. Chloroplasts are subunits of plant cells, mostoften known as crucial components of photosynthesis. Although thesechloroplast-rich plant cells are not equipped to prevent bleeding--plants areunable to make human clotting factors biologically active--they have shown anability to induce tolerance in the immune system to FIX. Researchers have beendeveloping this novel therapeutic approach for several years to create potentialvaccines against malaria and cholera, and genetically engineered insulin to helpprevent diabetes.

Daniell and Herzog recently took the next step and tested this approach in twodogs with hemophilia B. They fed both dogs their normal food along with theengineered lettuce cells converted into a green powder form. There have beenno reports of anaphylaxis or inhibitors in the mice from the earlier study or inthe dogs that recently received the plant-based therapy. “So far, it’s going verywell,” reported Daniell. If this novel oral therapy continues to prevent treatmentcomplications in animal models, the next step will be to replicate that success inhuman clinical studies.

Fuente: Scientific American, 16 de diciembre de 2014

S

Tratamiento a base de plantas contra los inhibidores continúa evolucionando

ientíficos de la Universidad de Florida en Gainesville (UF-G) y laUniversidad de Pensilvania (U-Penn) continúan investigando un método

experimental basado en células vegetales para prevenir la formación deinhibidores y las reacciones alérgicas (anafilaxia) contra los tratamientos confactores de la coagulación en personas con hemofilia. El 16 de diciembre de 2014,se publicó en Internet (en Scientific American, una división de Nature America,Inc.) una actualización del progreso que han tenido.

El investigador principal Henry Daniell, PhD, director de investigación aplicadaen la Facultad de Odontología de U-Penn, y Roland W. Herzog, PhD, biólogomolecular de UF-G, han estado trabajando, durante varios años, en una técnicaque consiste en encapsular una “proteína que produce tolerancia” administradapor vía oral, tal como el factor IX (FIX), dentro de las paredes celulares deplantas. Al ingerirla, la proteína bioencapsulada transita de manera segura através del estómago antes de llegar al intestino delgado. La pared celular vegetalevita que el ácido estomacal degrade el FIX antes de tiempo. Finalmente,microorganismos devoran la pared celular, lo que permite la liberación gradualde la proteína.

Tomando como base estudios anteriores (2010) que usaron con éxito células detabaco manipuladas mediante ingeniería biomolecular para prevenir laformación de inhibidores y anafilaxia en ratones con hemofilia B (deficiencia delFIX), Daniell y Herzog están actualmente usando células de hojas de lechugaliofilizadas genomanipuladas para desencadenar una alta concentración del FIX.

Cada célula de hoja de lechuga contiene aproximadamente 10,000 cloroplastos,cada uno estructurado de forma tal que puede contener grandes volúmenes dela proteína del FIX. Los cloroplastos son subunidades de células vegetales,conocidos mayormente por ser componentes cruciales de la fotosíntesis.Aunque estas células vegetales ricas en cloroplastos no pueden prevenir lashemorragias (las plantas son incapaces de fabricar factores humanos de lacoagulación que sean activos), han demostrado una capacidad para inducirtolerancia del FIX en el sistema inmunitario. Los investigadores han estadodesarrollando este novedoso método de tratamiento durante varios años paracrear posibles vacunas contra el paludismo y el cólera, e insulina modificadagenéticamente para ayudar a prevenir la diabetes.

Daniell y Herzog recientemente pasaron a la siguiente etapa y pusieron aprueba este método en dos perros con hemofilia B. Les dieron a ambos perrossu alimento normal junto con las células de lechuga genomanipuladas, enforma de un polvo verde. No se ha notificado anafilaxia ni inhibidores en losratones del estudio inicial ni en los perros que recientemente recibieron eltratamiento a base de plantas. “Hasta ahora, está marchando muy bien”,reportó Daniell. Si este novedoso tratamiento oral continúa evitando lascomplicaciones del tratamiento en los modelos con animales, el siguiente pasoserá reproducir este éxito en los estudios clínicos con seres humanos.

Fuente: Scientific American, 16 de diciembre de 2014

C

5WINTER 2015 • LIFELINE

I am the mother of two boys who both have severe hemophiliaA, the youngest with an inhibitor. I work full time, so when DebbiAdamkin suggested I create a team, become the captain and startfundraising for the Walk in the Jungle, I was a little overwhelmedand a lot terrified. I felt I was crazy for even contemplating this.

How in the world was I going to raise money??? When do Ihave the time???

I bit the bullet and went in head first. I spend all my timeworking at a doctor's office, so that's where I started. I went to awholesale warehouse store and purchased all kinds of differentcandy bars, gummies, and snacks,set them up on my desk at workalong with a brochure that I madewith pictures of my boys explaininghemophilia and the walk details.Almost every patient was interestedin supporting the cause by buyingcandy and some people evendonated money. The doctors I workfor also contributed. At the end ofthe first week, not only did I sell outof candy, but I actually made a niceprofit. It was really easy, so Idecided to go to the other offices in the building during my lunchbreak. I would pass out brochures to the offices and asked if theywould like to participate in the walk and join our team or if theywould like to support us by donating. To my surprise, almost everyoffice made a donation and EVERYONE bought candy.

Who doesn't love CANDY?!?! I even had special requests forspecific candy bars and healthy snacks too. Back to the store Iwent.

I was hooked. I started thinking… hmmm… how could Iraise more money?

YARD SALE! I raided my closet, cleaned out the boys’ room,and even asked for friends and family to donate items to sell.Instant hit! I held three yard sales and raised a pretty penny. Inthe end, my first year fundraising was a success. Fundraising isfun! I get to advocate for hemophilia, talk and mingle with

people that I normally wouldn't andmake new friends. We had 32members on our team that year. Wedoubled our team goal and raised$2,000. I was amazed at what I wasable to accomplish. I realized thatunless you try, you'll never know. Ihave patients at my job asking whenI'll be selling candy again. I havefamily asking when the next walk is.I doubted myself in the beginning, butin the end, I realized I have moresupport than I would have ever

known if I had not gotten involved. In being involved in thebleeding disorders community and all the educational and funprograms that FHA offers, it feels amazing to know that I'm givingback, while teaching my kids that hard work pays off and canactually be fun.

Fundraising: You Can Do It Too!

7WINTER 2015 • LIFELINE

10 WINTER 2015 • LIFELINE

n Sunday, December 6th, our school organized the annualSt. Agnes Academy Christmas Bazaar where vendors sell

all kinds of merchandise and visitors buy their Christmaspresents. We rented a table in advance without knowing exactlywhat items we were going to sell, but we did know was that themoney collected would go to The Florida HemophiliaAssociation. After deciding on making handmade jewelry, ourmothers who were in Peru for a business trip, helped us out bypicking out unique Peruvian accessories, materials and toolsthat were necessary in making cute bracelets and necklaces.

We designed bracelets with threads made up of a variety of colors and textures. They had beautiful charms andinspirational words and we sell them at very competitiveprices. In order to create some exclusive bracelets, we cutup our school uniform skirts into thick strings and gavethem a touch of our own style. We sold more than 100pieces and everybody was thrilled with them and even afterthe Bazaar ended, we continued selling to other customersin and out of the school. Once we realized how fun thisexperience was and knew how much money we raised, we are looking forward to doing this again in the future.

We choose to donate to The Florida HemophiliaAssociation to support Martin (Frallicciardi) and all ofthose who suffer from bleeding disorders.

We hoped that we inspire others to make a difference inhelping those with hemophilia around the world.

Victoria andMarialex

raised $870

Victoria’s brother, Martin, suffers from Hemophilia A (severe).Both Victoria and Marialex had participated in previous fundraising

events to support the HEMOPHILIA WALK / Team Martin.

O

Bracelets FOR A CAUSEBy Victoria Fralllicciardi (11) and Marialex Penso (11)

13WINTER 2015 • LIFELINE

LUNCH 4 A CURE

atalia Fonseca and some of her friends started the Lunch4 A Cure Group in 2012 as a way to support kids in

their home country of Brazil. She reconnected with RobynSalk on Facebook after seeing that her daughter, who Nataliaused to babysit, had been diagnosed with hemophilia. Robyntold her about the upcoming Walk and even though shecouldn’t make it to Jungle Island, Natalia knew she had tosupport it in honor of Carly. But how would she do it?

In Brazil, it is common to have a big lunch and servetraditional foods. The group thought this would be the perfectway to bring everyone together and support a cause. They hitthe ground running and went to local businesses to ask fordonations and they found that people were happy to give. Somegave food, some gave raffle prizes and some even madedonations! Then, they had to figure out how to get people tocome to this lunch. Natalia talked to her friend who is a webdesigner and she made a great flyer. But how would shepromote it? Facebook! Since it was where she reconnected withRobyn, she thought it would be the perfect place. In the firstyear, she was nervous and concerned that the group had takenon too much. But all of those nerves were put to rest when theevent turned out to be a success!

Three years later, the Lunch 4 A Cure has raised over $3,000to support the Walk in the Jungle and the group couldn’t behappier about their success. Natalia gets so emotional when shetalks about it because she has grown to really understand thedifference it makes in the lives of people with bleedingdisorders. Each year, when she calls Robyn to report how muchthey’ve raised, it brings tears to their both of their eyes. Nataliaand the Lunch 4 A Cure group are a wonderful reminder ofhow when people set their mind to something and cometogether, great things can happen!

N

14 WINTER 2015 • LIFELINE

FHA is proud to announce a brand new programfor teens and young adults ages 15-21.

JULY 31 – AUGUST 2Be on the lookout for more information!

NEW PROGRAM!

FHA is proud to announce a brand new programfor teens and young adults ages 15-21.

JULY 31 – AUGUST 2Be on the lookout for more information!

n February 11 and 12, the Bleeding DisorderCoalition of Florida (BDCF) hosted its second

annual State Legislative Day. Volunteers from allacross Florida took Tallahassee by storm to meet withtheir local representatives and senators at the StateCapitol. Everyone arrived the night before for atraining dinner, where representatives from NHF andthe Hemophilia Federation of America gave anoverview of the legislative process and tips foreffectively communicating with legislators. The nextday, everyone went to their scheduled appointments.Legislative days are important to our communitybecause they ensure that the voice of bleedingdisorders community is being heard! Each year thatwe travel to Tallahassee, we build relationships withlegislators and put a face to our cause, which is vital toensuring our voice is heard. If you are interested inadvocacy and the BDCF, please email Debbi atdadamkin@floridahemophilia.org to get involved.

O

Second Annual State Legislative Day

THURSDAY, JULY 16 – SUNDAY, JULY 19HILTON PALM BEACH AIRPORT

150 Australian Ave, West Palm Beach, FL 33406

Look out for registration packets in the mail!

NEW DATE! NEW LOCATION!

We are excited to announce that we are once againaccepting applications for the

Daniel L. Carlin Memorial Scholarship!

SCHOLARSHIP FUNDS

FHA will be awarding a total of three (3) $1,000scholarships for the 2015-2016 academic year.

Two (2) of these scholarships are designated forpeople who are diagnosed with a bleeding disorder.

One (1) of these scholarships is designated for aparent of a child diagnosed with a bleeding disorder.Applications must be received by June 1, 2015 in

order to be considered for a scholarship. Awards will be dispersed directly to the institution.

For more information, please contact Debbi at

dadamkin@floridahemophilia.org

for the application packet.

SPACE IS LIMITED! Please email

dadamkin@floridahemophilia.orgto request forms or for more information.

FRIDAY, JUNE 12SATURDAY, JUNE 18

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,

Translation:

Roxana Ambrosini, Roxanna Delgado

Design and Production:

Group M, Advertising & Design305-235-2538

Florida Hemophilia Association Office(888) 880-8330

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

19WINTER 2015 • 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

If you would like to contribute to Community Corner, please submit your stories to

Debbi at dadamkin@floridahemophilia.org

www.facebook.com/FloridaHemophilia

@FLHemoAssoc

www.youtube.com/user/FloridaHemophilia

FHA is online! Visit www.floridahemophilia.org

for upcoming programs, event photos and more!