10th annual unite for bleeding disorders walk...in memory of donald emory sadly, we lost donald, an...
TRANSCRIPT
The Official Newsletter of the Florida Hemophilia Association
WINTER 2020
BDCF Advocacy Days Tallahasee, FLFebruary 18-19
NHF Washington DaysWashington, DCFebruary 26-28
Coalition for Hemophilia B AnnualSymposiumOrlando, FLMarch 19-22
FHA/UM Educational DinnerMiami, FLMarch 25
World Hemophilia Day April 17
Lighten Up! Johnson & Wales, North Miami, FLApril 19
HFA Annual SymposiumBaltimore, MDApril 23-26
Unite for Bleeding Disorders WalkCoconut Creek, FLMay 3
UPCOMING EVENTS AND PROGRAMS
INSIDE
This is the time to remember those we’ve lost and to honor those living with a bleeding disorder. Help raise awareness
by sharing your personal story.
Bleeding Disorders Awareness Month is a great time to invite your friends, family, and coworkers to join you at the
10th Annual Unite for BleedingDisorders Walk
on May 3rd at Tradewinds Park inCoconut Creek
Let’s rally together to continue to raise awareness and crucial funds for our important programs and services
Executively SpeakingPage 2
Events/Program NewsPage 3-10
FHA Resource CenterPage 11
Happy 2020!
We are off to a great year and we’re lookingforward to providing you with some newand exciting programming for 2020!
This year commemorates our 10th AnnualWalk! It’s hard to believe that it’s been adecade since our inaugural walk on March
5, 2011! We look forward to celebrating 10 YEARS on May 3rdwith you and your loved ones at our new walk location atTradewinds Park, Coconut Creek, FL. Our walk is one of thebiggest fund-raisers throughout the country that UNITES thebleeding disorders community. Funds raised will be used toassist our overall mission of finding better treatments and curesand prevent complications of bleeding disorders by providingeducation, emotional support, advocacy, research and services.With your help this year, we can reach our goal. Please contactthe FHA office if we can assist you with registering for the walk,creating a team, providing you with fund-raising ideas or withletters of requests for sponsorships, in-kind donations, etc.
Please be on the lookout for Save the Dates and some of theupcoming events.
Finally, I want to express my deepest gratitude to everyone whocontinues to support FHA! You make it possible for us to continueour mission of serving the bleeding disorders community yearafter year!
THANK YOU!
¡Feliz 2020!
¡Estamos empezando un gran año y estamos entusiasmados enproveerles nueva y excitante programación en este 2020!
Este año, celebramos nuestra decima caminata. ¡Que difícil es creerque esta caminata es la edición diez desde la primera caminata del5 de Marzo del 2011! Esperamos celebrar diez años este 3 de Mayocon ustedes y sus seres queridos en nuestro nuevo lugar, el parqueTradewinds Park en Coconut Creek, FL. Nuestra caminata es uno delos más grandes recaudatorios de fondos que toma acabo por todoel país y que une a la comunidad de desórdenes sanguíneos.
Fondos recaudados serán usados para continuar nuestra misión deencontrar mejores tratamientos y curas. Por medio de la educación,apoyo emocional, abogacía, estudios y servicios, buscamosprevenir complicaciones en los que padecen/padecemos de estasenfermedades. Con su ayuda este año, podemos alcanzar nuestrameta. Por favor comuníquese con la oficina del FHA para que leayudemos en la registración para la caminata, creando un equipo,con ideas para recaudar fondos, con pedidos a patrocinadores, ocon donaciones.
Por favor este pendiente de la sección “Save the Dates” y denuestros eventos que se avecinan.
Para concluir, quiero expresar mi más profundo agradecimiento atodos que continúan apoyando FHA. Ustedes hacen posible quenosotros continuemos nuestra misión de servir a nuestra comunidadaño tras año.
¡MUCHAS GRACIAS!
2 WINTER 2020 • LIFELINE
ExecutivelySpeaking MensajeEjecutivo
Debbi AdamkinFHA Executive Director
Debbi AdamkinDirectora Ejecutiva de FHA
3WINTER 2020 • LIFELINE
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Celebrating a Decade of Walking
his year, we celebrate our 10th Annual UNITE Walk. The walk is a not just a fundraiser,but an opportunity to support those in the bleeding disorders community. While we look
proudly at our past programs and services, this is no time to rest on our laurels. This year andinto the future, we look forward to continuing our mission of serving the bleeding disorderscommunity and celebrating many more milestones. You in?
T
4 WINTER 2020 • LIFELINE
Celebrating a Decade of Walking continued...
5WINTER 2020 • LIFELINE
Women’s RetreatWomen’s RetreatWomen’s Retreat
End of the Year E V E N T
THANK YOU SPONSORS
Special Thanks to Our Event Sponsors and Volunteers
This program was made possible by a grant from
In Memory ofDonald Emory
Sadly, we lost Donald, an activecommunity member and a dedicatedand valued volunteer at FHA Events.He generously donated his time andcontributed to the Florida bleedingdisorders community. He was a loving husband and fatherand is survived by his wife Heatherand daughters Victoria and Amanda...
6 WINTER 2020 • LIFELINE
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7WINTER 2020 • LIFELINE
8 WINTER 2020 • LIFELINE
Let’s All Lighten Up!Sunday, April 19, 2020, 10:00 a.m.
SPACE IS LIMITED, PLEASE RSVP BEFORE APRIL 8to: [email protected] Program is intended for Adults, Teens (13 & up)
Johnson and Wales • 1701 NE 127th StreetNorth Miami, FL 33181
EL ESPACIO ES LIMITADO, por favor confirme su asistencia antes del 8 de Abril a: [email protected] Programa está destinado a Adultos,Adolescentes (13 y hacia arriba)
Johnson and Wales1701 NE 127th StreetNorth Miami, FL 33181
The Lighten Up Program is back! On April 19, 2020, the Florida Hemophilia Association,together with the University of Miami Hemophilia Treatment Center and Johnson and Wales, will
bring you this fun, informative cooking and nutrition program.Have a favorite recipe that could use some lightening up? Submit it to us before March 20th and itmay be one of the recipes that the Chefs at Johnson and Wales recreate into a healthier version.
Even if you’re not a Cook you will have an opportunity to be a “Chef for the Day” preparing food in astate of the art kitchen. Afterwards we’ll all enjoy our delicious creations.
¡Todos aligeran!Domingo, 19 de abril de 2020, 10:00
¡El Aligerar para Arriba programa está de vuelta! En 19 de Abril de 2020, la Asociación dehemofilia de la Florida, junto con el Centro de Tratamiento de hemofilia de la Universidad de Miami y
Johnson y Wales, llegará este divertido programa de cocina y nutrición informativa.¿Tiene una receta favorita que podría usar algún rayo? Envíela a nosotros antes del 20 de marzo y puedeser una de las recetas que los Chefs de Johnson y Wales se recrean en una versión más saludable. Inclusosi no eres cocinero tienes la oportunidad de ser un "Chef para el Día" preparación de alimentos en una
cocina de vanguardia. Luego todos disfrutaremos de nuestras deliciosas creaciones.
9WINTER 2020 • LIFELINE
SCHOLARSHIP FUNDSFHA will be awarding up to FIVE (5) $500- 1,500 scholarships for the 2019-2020 academic year.In order to qualify for this scholarship, the applicant must be diagnosed with Hemophilia, Von WillebrandDisease or related inherited bleeding disorder OR the parent of a child diagnosed withHemophilia, Von Willebrand disease or other related bleeding disorder.Applicants must be currently enrolled in good academic standing atOR accepted into an accredited college, university or trade school andpursuing a degree, certification or license. Applications must be received by May 8, 2020 in order to beconsidered for a scholarship. Applicants must be Florida residents.For more information or to obtain an application packet, pleasecontact [email protected] or call 305.235.0717
APPLICATIONS ARE NOW BEING ACCEPTED!
Please email [email protected] request forms or for more information.
JUNE 26 • JULY 10
10 WINTER 2020 • LIFELINE
For more information, please contact us by email [email protected] or call 305-235-0717.
Date: TBD Keepan eye out for dateannouncement
CENTERS FOR BLEEDING DISORDERS*Hemophilia Treatment Center (HTC)
ABOUT THIS PUBLICATION
Florida Hemophilia Association Office(888) 880-8330
Executive DirectorDebbi Adamkin(305) [email protected]
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 501Ft. Lauderdale, FL 33304Toll Free: (888) 880-8330www.floridahemophilia.org
Translation:Roxanna Delgado
Design and Production:Group M, Advertising & Design305-235-2538
11WINTER 2020 • LIFELINE
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 501Ft. Lauderdale, FL 33304