The Official Newsletter of the Florida Hemophilia Association

FALL 2018

BDCF State DaysTallahassee, FLMarch

Daniel L. Carlin MemorialScholarshipAvailable March

NHF Washington DaysWashington, D.C.March 27-29

9th Annual UNITE for BleedingDisorders WalkMay 5, 2019

36th Annual Florida BleedingDisorders Education ConferencePalm Beach, FLJuly 26-29

UPCOMING EVENTS AND PROGRAMS

INSIDE

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Executively SpeakingPage 2

Program NewsPage 7-9

Community CornerPage 12

NHF NewsPage 13 - 14

FHA Resource CenterPage 15

eautiful golf course, blue skies, and anothergreat golf event! We hosted the 29th

Annual Swing for the Kids Golf Tournament onMonday, November 12, 2018. We are so thankfulto all of the local businesses for donating all of thegreat items that really made our silent/live auction,and raffle a big success. And a special shout out to

our amazing MC David Boylan for keeping thecrowd engaged and getting all of our items sold! Finally the day wouldn’t have been a successwithout the golf committee, devoted volunteers,sponsors, and all of the participants who came outto support the bleeding disorders community-THANK YOU!

B

Wow, can you believe we’re in the finalstretch of another wonderful year at FHA! Iwould like to extend my dearest gratitude tothe Board of Directors, our amazingsupporters, awesome volunteers and ournew staff members Joe and Cathy. Eachand every one of them assisted theorganization in achieving our goals, and

provided their time and energy to make our events victorious.

We are asking for your continued support by rising up and joiningus for our Unite for Bleeding Disorders Walk, spreadingawareness and helping us raise critical funds to increase ourreach and effectiveness! Please form a team and join us on May5, 2019, or sign up as virtual team or walker!www.uniteforbleedingdisorders.org/event/Florida2019. Thank you for all of your support, we love you and encourage youto reach out or stop by the FHA office to say hello!

Thank you and I look forward to seeing you in 2019!

¡Guau, es difícil creer que ya estamos en la recta final de otromaravilloso año en la FHA! Me gustaría hacer llegar mi mássentida gratitud a la Junta Directiva, a las increíbles personas quenos apoyan, los fantásticos voluntarios y los nuevos integrantes denuestro personal Joe y Cathy. Todos ellos ayudaron a laorganización a alcanzar nuestras metas, y brindaron su tiempo yenergía para que nuestras actividades fueran un éxito.

Le solicitamos que nos continúe apoyando con su presencia alunirse a nosotros para nuestra caminata Unite for BleedingDisorders (Unámonos por los trastornos hemorrágicos),difundiendo la concientización y ayudándonos a recaudar losfondos esenciales para aumentar nuestra resonancia y eficacia. Leanimamos a que forme un grupo y se una a nosotros el 5 de mayo de2019, o inscríbase como equipo o caminante virtual.www.uniteforbleedingdisorders.org/event/Florida2019. Muchasgracias por todo su apoyo, le apreciamos y nos encantaría que secomunicara con nosotros o pasara por la oficina de la FHA parasaludarnos.

¡Gracias y espero verle en el 2019!

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ExecutivelySpeaking MensajeEjecutivo

Debbi AdamkinFHA Executive Director

Debbi AdamkinDirectora Ejecutiva de FHA

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1st PLACE: TEAM MASSEY YARDLEYJoe D’Amico, Ray Jordan,

Greg Rapplean, Joe Sorrentino

2nd PLACE: TEAM PLANET GOLFPeter Tsotsos Bobby Dinicola, Edward

Feenane, Lara Pavloff

3rd PLACE: TEAM LEVY ADVERTISINGRichard Joblove, David Levy,

Michael Melamud

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PLATINUM CUP SPONSORShire

MAJOR CUP SPONSORCSL Plasma/PKSW

Corporate Cup SponsorsBayer Novo Nordisk

Crystal Cup SponsorCSL Behring

Beverage SponsorHilton Palm Beach Airport

Par SponsorEmbassy Suites West Palm BeachThe Wingmen Foundation

Lunch SponsorGiardino Gourmet Salads

Hole SponsorsBob and Beth CarlinGroup M, Advertising & Design Inc.Joel E. Bernstein and Rhonda LewisMorgan-Weiss, LLC Soleo HealthZuni Transportation

In-Kind SponsorsE+J WineryHouse WineKenography One Lago Mar Country ClubMack House Brew Pub Massey Yardley Levy AdvertisingRed BullStretch Zone

THANK YOUSPONSORS!

Debbi Adamkin

Elise Boston

Sherry Boylan

Karen Levy

John Novoa

Alex Perez

Lynn Slack

Auction/Raffle Sponsors and Donations

Thank You To OurGolf Committee

Anthony’s Coal Fire Pizza Blue MartiniBusch Gardens Colada Coral Ridge CCCuba Libre Deer Creek Golf ClubDelray Sands ResortDiamond Strike LanesDolphins Plus BaysideDoubleTree Downer’s GroveEmbassy Suites WPBFlorida PanthersMarriott Harbor Beach Fresh Market Frost Museum of ScienceGiardino Good Spirits Fifth & FedHomestead-MIA SpeedwayHyatt Regency Coconut Point Jungle Queen RiverboatKennedy Space CenterKeno Brothers Jewelers

Kt Janes/OccasionsLa Costa Organic JewelryLago Mar CCLagunitasLifestream Spa Louie Bossi’s Ristorante Mango’s South BeachMIA Marriott Biscayne Bay MidiCi Painting With a Twist Palm Aire CCPalm Beach National CCPalm Beach OperaPalmetto Pine CCPGA National Resort & SpaRaptor Bay Golf ClubRenaissance Sea WorldROK: BRGR Salon SavvySanibel Harbor Marriott Seaside GrillSoundarya SpaSouthwest Airlines

Spirit AirlinesSummer’s Limo/Car Serv.Starbucks #08328Taco Craft Top Golf Miami GardensThe Cheesecake Factory The Hummus HouseThe Salt SuiteThe Super AgencyTin FishTotal Wine & More Tower Club Trader Joe’s #776Venetian Nail Spa PlantationWater Taxi Waterstone Resort Westin Cape Coral Whole Foods Winterfest Boat ParadeWorld Center MarriottXtreme Action ParkZoo Miami

Barbie ArrebolaRita BarrowElise BostonSherry BoylanKen CrandallJulie Doar-SinkfieldPatricia EspinosaCarla FascianoLiz GarciaBorbora KassdkianLorie KelleyMyriam LagomasinoCathy Lopez

Jimmy LopezEdgar MartinezBarbara MatiasLourdes MelendezJohn NovoaKen OkumAlex PerezLynn SlackHeather StewartDaria VallarioAmanda VassaloLeinzs Vincent

Thank You To Our Volunteers

Thank you to everyone who helped make this year’s golf tournament another success!

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Women’sRETREAThe Women’s Retreat was onDecember 1-2 at the scenic

Waterstone Resort & Marina. This is aprogram that women look forward toattending every year, because they knowthey’re going to reacquaint with oldfriends, meet new friends, and have aspace to call their own. It’s a greateducational weekend for women, teens,and moms affected by bleeding disorders.We were happy to welcome a few newfaces this year!Friday evening started with some fun ice-breakers and dinner. Then there was fiercecompetition amongst the ladies withgames, dance moves and karaoke! OnSaturday morning, everyone “Stretched itOut” with some yoga and stretchingexercises. The day also included sessiontopics on Self-Discovery, MoneyManagement, Women’s Issues and Make-up demonstrations. As you can see fromall of the pictures, this was an amazingevent and we look forward to seeing younext year!

T

This program was made possible by a grant from CSL Behring.

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FALL EVENTS LADIES BRUNCH AND BOWLING EVENTSponsored by Octapharma

CONGRATULATIONS TO THIS YEAR’S TEEN IMPACT AWARDS WINNERS FROM OUR COMMUNITY.Litzy Garduno, Victoria Emory, Vickie Frallicciardi

Hispanic Heritage

SPONSORED BY:

E V E N T S

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Submitted by Jocsan – age 17

I had a beautiful experience visiting Arizona for the CSLBehring JNC. I had the opportunity to meet so many kids fromdifferent states that have hemophilia like myself. For me this isa dream come true that I was able to show my skills off inbaseball and just be able to be play the sport with people withthe same bleeding disorder as me. The hotel, the food, and theaward ceremony was just so nice and pleasing. It is very goodthat companies like CSL Behring have events like this for thebleeding disorder community. I would like to thank the FloridaHemophilia Association for choosing me and allowing me toparticipate and represent Florida. Most importantly i would liketo thank CSL Behring for hosting this event and just for thebeautiful experience that I will never forget.

Submitted by Kenneth, age 10

Thank you for making it possible for me toparticipate in this competition, everything wasvery nice, I met new friends, listening to PerryParker is a pleasure. When I grow up I want tobe like him. Thanks so much.

MY TRIP TO PHOENIX, ARIZONA AND THE JNC

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NHF • eNews 2018

s individuals with hemophilia live longer and reachlife expectancy rates comparable to the general

population, their healthcare providers will continue toencounter clinical challenges inherent in treating andmanaging aging patients, including cardiovascular disease(CVD). There are several established risk factors associatedwith CVD such as hypertension, overweight, obesity and anabnormal lipid profile. With this knowledge in hand andwith an eye towards prevention, investigators at the RadyChildren’s Hospital San Diego (RCHSD) Hemophilia andThrombosis Treatment Center (HTC) decided to look atCVD risk factors in some of their younger hemophiliapatients.

The lead author of the study was RCHSD medical directorCourtney Thornburg, MD, MS. She and her research teamapproached patients during their comprehensive care visits,ultimately recruiting 43 males with hemophilia A or Bbetween the ages of 5 and 20 (average age 12). Patient dataand additional information was culled from a combinationof electronic health records for clinical data, standardizedmeasurements of weight, height, waist circumference andblood pressure and screenings of glucose and lipids. Patientsand/or their caregivers also completed questionnairesrelevant to medical history, lifestyle and family history (FH).

The results showed high rates of overweight and obesityamong the participants. Investigators also observed otherCVD risk factors, including (pre)hypertension in 28% and“borderline” high lipids in 19% of the subjects. Higherlevels of physical activity correlated with normal weightlevels, while higher weights were linked to greater factorconsumption. Seven participants (16%) reported a FH ofCVD. These and additional findings prompted the authorsto hypothesize that cardiovascular risk factors could beidentified and measured as part of a comprehensive clinicvisit and that best practices to mitigate those risks could beintegrated by the entire HTC team.

“HTCs may utilize internal resources, including dieticians,physical therapy (PT) and child life specialists torecommend therapeutic lifestyle changes for a healthy dietplus avoidance of tobacco and alcohol use. In addition, ifchildren are identified with overweight or obesity at acomprehensive clinic visit they may be referred to theprimary care physician for follow-up and/or to obesity andbehavioral health programs as appropriate. PTs mayperform targeted joint and muscle examinations andprovide patient-specific recommendations to increaseconditioning and sports participation.”

The authors cited study limitations. The data was based onone HTC visit instead of over time, which is important forlonger term monitoring of factors such as body mass index(BMI), blood pressure, lipid profiles. While physical activity,smoking and nutrition data were collected only by self-reporting without validated questionnaires, future studiescould be augmented using food logs to measure caloricintake and accelerometers to measure physical activity.Lastly, future studies would also benefit from the inclusion ofa healthy control group. The authors note that byaddressing certain limitations, future studies could be moreeffective in CVD risk reduction, especially in concert withthe primary care physician (PCP).

“Ultimately, resources will be required to monitor theimpact of interventions on BMI, cholesterol, hypertensionand physical activity. Further study is warranted todetermine if HTCs can partner with PCPs and appropriatespecialists to promote cardiovascular health and riskreduction. Interventions should include shared decision-making strategies to set realistic goals and methods of self-monitoring” concluded the authors.

This study “Risk Factors for Cardiovascular Disease inChildren and Young Adults with Haemophilia,” waspublished in the June 2018 issue of Haemophilia.

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San Diego HTC Looks at Cardiovascular Disease in Young People with Hemophilia NHF Newsletter Story 2018

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NHF • eNews 2018

medida que las personas con hemofilia viven mástiempo y alcanzan tasas de esperanza de vida

comparables a las de la población general, sus proveedores deatención médica seguirán enfrentándose a las situacionesclínicas que acarrean el tratar y manejar a los pacientesenvejecientes, entre ellas las enfermedades cardiovasculares(ECV). Existen varios factores de riesgo que se asocian a lasECV, como la hipertensión arterial, el sobrepeso, la obesidad yun perfil de lípidos fuera de los valores normales. Armados coneste conocimiento y enfocados en la prevención, losinvestigadores del Centro para el tratamiento de la hemofilia yla trombosis (HTC) del Rady Children’s Hospital San Diego(RCHSD) decidieron estudiar los factores de riesgo para ECVen algunos de sus pacientes más jóvenes con hemofilia.

La autora principal del estudio fue la Dra. CourtneyThornburg, MS, directora médica del RCHSD. Ella y suequipo de investigación abordaron a los pacientes durante laconsulta de atención integral, y a la larga inscribieron a 43varones con hemofilia A o B entre 5 a 20 años de edad(promedio: 12 años). Los datos de los pacientes y otrainformación provinieron de una combinación de las historiasclínicas electrónicas para los datos clínicos, medicionesestandarizadas del peso, la estatura, el perímetro abdominal y lapresión arterial, así como también determinaciones de laglucosa sanguínea y los lípidos. De igual forma, los pacientes osus cuidadores respondieron cuestionarios pertinentes para losantecedentes médicos, el estilo de vida y los antecedentesfamiliares.

Los resultados mostraron tasas elevadas de sobrepeso yobesidad entre los participantes. Los investigadores tambiénobservaron otros factores de riesgo para ECV, entre ellos(pre)hipertensión arterial en el 28% y valores de lípidos en ellímite superior de la normalidad en el 19% de los pacientes.Niveles más elevados de actividad física se correlacionaron concifras normales en el peso corporal; mientras que, un mayorpeso corporal se vinculó a un mayor consumo del factor. Sietede los participantes (16%) reportaron antecedentes familiares deECV. Estos y otros resultados llevaron a los autores a plantear lahipótesis de que los factores de riesgo cardiovascular pudieranidentificarse y valorarse como parte de una consulta clínicaintegral y que todo el equipo del HTC podría integrar lasmejores prácticas para mitigar dichos riesgos.

“Los HTC podrían utilizar recursos internos, como losnutricionistas, los especialistas en fisioterapia y en vida infantil,para que recomienden cambios terapéuticos en el estilo de vidapara llevar una alimentación saludable y evitar el consumo detabaco y alcohol. Además, si durante una consulta clínicaintegral se identifica que el niño tiene sobrepeso u obesidad, sele podría enviar a su médico de atención primaria para fines deseguimiento o a programas de salud conductual según seaadecuado. Los fisioterapeutas pueden llevar a cabo exámenesdirigidos de las articulaciones y los músculos y proporcionarrecomendaciones específicas para cada paciente para aumentarel acondicionamiento y la participación en deportes”.

Los autores hicieron referencia a las limitaciones del estudio.Los datos se basaron en una visita al HTC en lugar de a lo largodel tiempo, lo cual es importante para un seguimiento a máslargo plazo de factores como el índice de masa corporal (IMC),la presión arterial y los perfiles de lípidos. Aunque la actividadfísica y los datos relacionados con el fumar y la alimentación serecopilaron solo mediante el reporte directo del paciente sincuestionarios validados, estudios futuros pudieran ampliarsecon el uso de registros de los alimentos para cuantificar laingesta calórica y acelerómetros para medir la actividad física.En último lugar, estudios futuros también se beneficiarían de lainclusión de un grupo de control con personas sanas. Losautores apuntaron que, al abordar ciertas limitaciones, futurosestudios pudieran ser más eficaces en la reducción del riesgo deECV, sobre todo al hacerlo en coordinación con el médico deatención primaria.

“En definitiva, se necesitarán recursos para supervisar el efectode las intervenciones en el IMC, el colesterol, la hipertensiónarterial y la actividad física. Es necesario hacer más estudiospara determinar si los HTC pueden aliarse con los médicos deatención primaria y los especialistas indicados para fomentar lasalud cardiovascular y la reducción del riesgo. Lasintervenciones deben incluir estrategias conjuntas al momentode tomar decisiones para fijar metas realistas y métodos deautobservación”, concluyeron los autores.

Este estudio titulado “Risk Factors for Cardiovascular Diseasein Children and Young Adults with Haemophilia” (Factores deriesgo para enfermedades cardiovasculares en niños y adultosjóvenes con hemofilia) se publicó en el ejemplar de junio de2018 de la revista Haemophilia.

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El HTC de San Diego analiza las enfermedadescardiovasculares en jóvenes con hemofilia NHF Newsletter Story 2018

CENTERS FOR BLEEDING DISORDERS*Hemophilia Treatment Center (HTC)

ABOUT THIS PUBLICATION

Florida Hemophilia Association Office(888) 880-8330

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

National HemophiliaFoundation(800) 424-2634

Hemophilia Federation of America(800) 230-9797

LA KelleyCommunications, Inc.Free resource material onHemophilia(978) 352-7657

CONTACT NUMBERSMISSION STATEMENT

Do the 5

1 Get an annual comprehensive check-up at a hemophilia treatment center. 2 Get vaccinated – Hepatitis A and B are preventable.3 Treat bleeds early and adequately. 4 Exercise to protect your joints. 5 Get tested regularly for blood-borne infections

Johns Hopkins All Childen'sOutpatient Care ClinicPediatric Cancer andBlood Disorders Center601 5th Street South,Third FloorSt. Petersburg, FL 33701Phone: (727) 767-4931www.allkids.org*HTC

Arnold Palmer Hospitalfor ChildrenThe Haley Center for Children’s Cancer and Blood Disorders92 West Miller St., MP 318Orlando, FL 32806Phone: (321) 841-8588www.orlandohealth.com*HTC

Joe DiMaggioChildren’s HospitalPediatric Specialty Center1150 N. 35th Ave.Suite 520Hollywood, FL 33021Phone: (954) 986-2234

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

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

Nicklaus Children’sHospitalKidz Medical ServicesDivision ofHematology/Oncology3100 SW 62 AveSuite 121Miami, Florida 33155Phone: (305) 662-8360*HTC

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

Nemours Children’sClinic, OrlandoDepartment of PediatricHematology/Oncology13535 Nemours ParkwayOrlando, FL 32827Phone: (904) 697-3789,(904) 697-3600

Sacred Heart PediatricHemophilia Program,PensacolaPhone: (850) 416-7712

St. Joseph’s Children’sHospitalPediatric HematologyOncology Out-patientClinic3001 W. Dr. MartinLuther King Jr. Blvd.Tampa, FL 33607Phone: (813) 554-8294or (813) 321-6820*HTC

The University of MiamiHemophilia TreatmentCenter Pediatrics and AdultsUniversity of Miami Miller School of MedicineDepartment of Pediatrics Div of Hematology/OncologyLocator Code D8201601 NW 12th Ave., Room 5019Miami, FL 33136Phone: (305) 243-0834www.htcextras.org*HTC

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

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

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

Translation:Roxanna Delgado

Design and Production:Group M, Advertising & Design305-235-2538

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FHAResourceCenterThe 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