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					                                   lifeline The Official Newsletter of the Florida Hemophilia Association



         SPRING 2008


         InsIde
                                   Mother’s Educational
executively speaking
Page 3
                                   Focus Luncheon
Christian school
Plays for Hemophilia
Awareness
Page 5
Washington days
Page 6-7
FdA Approval of
Factor VIII drug
Page 10
HFA Annual
Meeting                                                                        See more photos of this event on page 8.

Page 11
                                   By Joycy Ann LaCombe                             submitted Isaiah to the ER physicians



                                   B
                                                                                    at Joe DiMaggio. They performed a
sAVe THe dATe                             runch downtown, what a warm
                                                                                    complete battery of tests relating to his
                                          introduction to the mothers,
• Dolphin Day Camps                                                                 symptoms and it was at that time that
                                          grandmothers, aunts and sisters
July 18, August 1, Key Largo, FL                                                    we learned of his condition. I really
                                   of children with bleeding disorders here
                                                                                    do not recall where we went from that
• Boggy Creek Summer               in South Florida. It was my pleasure to
                                                                                    point until the present, because my full
Camp July 8 - 13, Eustis, FL       meet and mingle with a strong, vivacious
                                                                                    grasp, which is still continually growing,
                                   group of women Sunday afternoon, for
• 25th Family Education                                                             did not occur until last summer when
                                   my first Mother’s Brunch at Perricone’s
Symposium August 8 -10,                                                             Isaiah was six. During the scheduling
Deerfield Beach, FL                on Brickell Ave. The mood was right and
                                                                                    of a presumably outpatient procedure,
                                   the food was a delight as I was initiated
• Swing for the Kids                                                                I mentioned to the performing surgeon
                                   into the group. It was enlightening to
Golf Tournament                                                                     that Isaiah has a clotting disorder. The
                                   hear from mothers of newly diagnosed
October 23, Miami Beach, FL                                                         outpatient procedure quickly turned
                                   children to mothers and grandmothers
                                                                                    into a four day hospital stay as they
• Boggy Creek Family               of now young adults. These women
                                                                                    planned to infuse prior to, during and
Camp October 24 - 26, Eustis,      came out to share their wisdom and
                                                                                    after the surgery, monitoring the levels
FL                                 show support to all who needed.
                                                                                    until discharge. With this knowledge in
                                        My son, Isaiah, has a mild form
• National Hemophilia                                                               hand, I felt pretty confident about the
Association Annual                 of Factor VII deficiency. After many
                                                                                    procedure and just worked on mentally
Meeting November 13 -15,           occurrences of spontaneous nose bleeds
                                                                                    preparing my little boy for the stay. Little
Denver, CO                         during his first two years, we finally
                                                                                    did I know the reality of his condition, it
• Holiday Duo December 6,                                                                                      Continued on Page 8
Pembroke Pines, FL
                                                                                                           LIFELINE • SPRING 2008    1
    OPPORTUNITY TO GIVE
    Planned Giving When you make a future or planned gift, you help so many people.

    R
           emembering the Florida Hemophilia Association               legacy in your will for the Florida Hemophilia Association.
           in your estate plans or will directly impacts the           You can leave a specific amount or a percentage of your
           lives of people living with hemophilia and related          assets. Gifts may include, but are not limited to: stocks,
    bleeding disorders and their family members. You will also         bonds, guaranteed investment certificates, real estate, art and
    touch the lives of those who might someday be affected by          jewelry. Speak with your financial advisor about Planned
    a bleeding disorder. Arrangements can be made to leave a           Giving. Your gift can make a real difference!!


    “Partners in Caring”
       Consider becoming a “Partner in Caring”, another way to help the FHA to carry out our important
    work to improve the lives of so many.

                                 Yes! I would like to become a Partner in Caring:
                        ❏      Corporate Partner $5,000                         ❏ Corporate Sponsor $2,500
                        ❏      Support $1,000                                   ❏ Friend $250
                        ❏      Member $25                                       ❏ Other ____________
                        ❏      I would like to volunteer for upcoming special events. I can be contacted
                               by phone or email me at _____________________________________

    Please make checks payable to: Florida Hemophilia Association • 18001 Old Cutler Road, Suite 501
    Palmetto Bay, FL 33157 • (888) 880-8330 • www.floridahemophilia.org (Your contribution may be tax
    deductible to the extent allowed by law.)

    A copy of the official registration and financial information may be obtained from the division of consumer services by calling toll
    free (888) 880-8330 within the state. Registration does not imply endorsement, approval, or recommendation by the state.




                 4th Annual Volley for a Cure Tennis Tournament




        y                                                                                                           y
                                       THANK YOU SPONSORS!
                                                        Event Sponsors
                                  BAYER HEALTHCARE • BAXTER BIOSCIENCE
                            CSL BEHRING • CORAL OAKS TENNIS CLUB • GT SPORTS

                                                Auction/Raffle Prize Sponsors
             Alper JCC • Busch Gardens • Coral Oaks Tennis Club • Healis Fitness Center • Jeanne Bashein
             Jane Foreman • Madison’s By the Bay • Miami Children’s Museum • Muvico Theatres • Panera
                P.F. Chang’s • Pinecrest Bistro (The Zone) • Property Management Inc. • TJX Foundation
                                              Trattoria Luna • Tupelo Honey



2     SPRING 2008 • LIFELINE
ExecutivelySpeaking
                                                                                        CONTACT NUMBERS
                                                                                   Florida Hemophilia
                                                                                   Association office
                                                                                   (888) 880-8330



I
     t’s hard to believe that spring is   people affected by hemophilia and        President of FHA
     here and summer is just around       bleeding disorders. We are in the        Linda Thomas
     the corner. Before we know it,       early stages of planning a health fair   (954) 426-0562
our kids will be finishing up the         day next year at our state Capitol.      executive director
school year and going off to camp.        If you are interested in being part      Debbi Adamkin
Speaking of camp, if you haven’t          of the group, please let us know.        (305) 235-0717
already signed up for hemophilia          Check out the “Washington Days”          national Hemophilia
camp at Boggy Creek, call your            articles on Pages 6 - 7 to read about    Foundation office
hemophilia treatment center for           our adventures on the hill.              (800) 424-2634
more information. Once again,                   On another note, during            Hemophilia
we will be hosting the one day            March, Hemophilia Awareness              Federation office
                                                                                   (800) 230-9797
“Fonzie Dolphin Camp.” This               month, we had an opportunity to
year we will offer two dates: July        help create awareness of hemophilia      lA Kelley
                                                                                   Communications, Inc.
18 and August 1. If your child had        and bleeding disorders to people         Free resource material on
the opportunity to attend last year,      outside the community. On March          Hemophilia
you know just how awesome it is.          14 we hosted the 4th Annual Volley       (800) 249-7977
Please call us to reserve your spot       for a Cure Tennis Tournament
today as space is limited.                at Coral Oaks Tennis Club. We
       Speaking of awesome, that          raised $10,000 and in the process
brings me to the 25th Annual              educated people about bleeding
Family Education Symposium.               disorders. All of the ladies who
This year’s meeting will be held          attended had a great time and, of
later in the summer, August 8 - 10        course, it was great for me because
at the newly renovated Embassy            I had a chance to play tennis too!
Suites Deerfield Beach Resort. We         The Florida Christian School ran
are now in the process of planning        their Non-Uniform day again on           AbouT THIs PublICATIon
another great meeting. Many of            March 28. It was a huge success.         LifeLine is the official
you have asked about registration.        Find out more details about this         Newsletter for Florida’s
Registration forms should be in           great fund-raiser on page 4.             Original Chapter of the
the mail by the end of May. If you              As usual, I am once again          National Hemophilia
                                                                                   Foundation.
plan on attending, please be sure to      asking for your help to make your
                                                                                   It is produced quarterly and
fill them out in a timely manner as       organization the best that it can        distributed free of charge to
space is limited.                         be. Please help by volunteering.         requesting members of the
       We’ve been extremely busy          There are several ways to do this.       bleeding disorder community.
here at the Florida Hemophilia            If you have a particular interest
Association. Last month many              or talent that you would like to         Florida Hemophilia
of you received emails from me            share, please let us know. You           Association Headquarters
                                                                                   18001 Old Cutler Road, Suite 501
asking you to help by calling             have an opportunity to help with         Palmetto Bay, FL 33157
your legislators. Some of you are         the annual “Swing for the Kids           Toll Free: (888) 880-8330
reluctant to get involved because         Golf Tournament” scheduled               www.floridahemophilia.org
you don’t fully understand the            for October 23. If you have ever
legislative process. Legislators          participated in a golf tournament        newsletter Committee:
want to hear from you to get your         or any fund-raiser, you know that        Ron Hoffmann, Debbi Adamkin,
feedback. By becoming an advocate         there is a tremendous amount of          Maria Rubin, and Linda Thomas.
for hemophilia and bleeding               planning that goes into it. Most
                                                                                   design and Production:
disorders you will be helping by          of our funding for programs and          McShane Communications, Inc.
looking out for the interests of all      services come from the proceeds of       www.mcshanecom.com
                                                           Continued on Page 8




                                                                                           LIFELINE • SPRING 2008   3
Florida Christian School Plays for
Hemophilia Awareness
By Denise Leggett                                                            Very special thanks to coaches Ernie Padron and



W
                                                                        Chris Brigman for carrying out this fundraiser and helping
           ith the stands at Patriot Field filling up past
                                                                        to create awareness of hemophilia and bleeding disorders
           capacity, there was a unique feeling surrounding
                                                                        in our community.
           the game Friday night between Florida Christian
Patriots and Gulliver Raiders. The ceremonial pitches



                                                                        P
were tossed by a couple of young boys, both affected
                                                                               atriot Field se llenó a capacidad creando un ambiente
with hemophilia. From their smiling faces, it was joyful
                                                                               especial en anticipación del partido entre los Florida
to see them carry out normal activities, just like any other
                                                                               Christian Patriots y los Gulliver Raiders. Dos
children their age. The Florida Christian Patriots, through
                                                                        niños afectados por hemofilia efectuaron los lanzamientos
their extensive charitable efforts, were able to raise a
                                                                        ceremoniales con sonrisas que reflejaban la alegría de
combined $2,300. A check in that amount was presented
                                                                        que traen las actividades típicas de la edad. Los Florida
to Debbi Adamkin, Executive Director of the Florida
                                                                        Christian Patriots, a través de sus grandes esfuerzos
Hemophilia Association, even as fans continued to show
                                                                        para la causa, lograron recaudar un total de $2,300. El
their generosity by donating into a deposit box located at
                                                                        cheque fue presentado a Debbi
Florida Christian’s concession stands.
                                                                        Adamkin, directora ejecutiva del
                                                                        Florida Hemophilia Association,
                                                                        en momentos en que el público
                                                                        seguía mostrando su generosidad
                                                                        depositando contribuciones en la
                                                                        caja de donaciones.
                                                                             Agradecemos especialmente a
                                                                        los entrenadores Ernie Padrón y
                                                                        Chris Brigman por llevar a cabo
                                                                        este evento y ayudar a difundir
                                                                        información acerca de hemofilia y
                                                                        otros trastornos de sangramiento.



Mark your Calendar!      NHF’s 60th                                     Apply Now for 2008 NHF
Annual Meeting – November 13 – 15                                       Annual Meeting Travel
       NHF’s Annual Meeting provides our entire community, from
consumers and providers to chapter staff and volunteers and             Grants
industry representatives ample opportunities to absorb information at        NHF is proud to announce its 6th Annual Travel
educational sessions, network with others in similar circumstances
and enjoy fun social events.
                                                                        Grant Scholarship Program for first-time attendees
       This year promises new, exciting events as well as what you      at this year’s 60th Annual Meeting held in Denver,
would expect from past meetings. Consumers and families are urged       Colorado.
to attend two preconference symposia this year—“Empowerment                   New this year, NHF will be awarding a select number of travel
at Every Life Stage” and “Insurance—Playing the Game to Win.”           grants to families newly diagnosed with a bleeding disorder—
Providers will be treated to a plenary session by Harvey Alter,         within the past year. Travel grants for the newly diagnosed are
MD, premier NIH researcher who identified the hepatitis C marker.       supported through an education grant from Wyeth. This program
The two-day medical track will provide substantive sessions for         allows families who have never been able to attend an NHF Annual
physicians and researchers.                                             Meeting to submit an application for the opportunity to receive the
       Consumers and physical therapists can try their hand, or         necessary funding to attend their first meeting.
feet, in the new kung fu session. Other sessions include ports,               Applications are available on the NHF Web site – www.
prophylaxis and inhibitors for parents; interpreting the national       hemophilia.org. Applications must be postmarked by Friday, June
presidential election results for the community; and for women, how     27, 2008. Contact Sonia Roger, NHF Education Coordinator sroger@
to talk about your period and life as a carrier.                        hemophilia.org

                                                                                                                  LIFELINE • SPRING 2008      5
NHF Washington Days
WASHINGTON DAyS ‘08                                               WASHINGTON DAyS ExPERIENCE
By: Maria N. Rubin                                                By Vanessa Ruiz



T                                                                 T
          his year’s Washington Days were a great experience.               his was my first time going to Washington Days and
          Sometimes a person who has been volunteering for                  for me the entire trip was a wonderful experience.
          as long as I have may feel like we work very hard for             For the first time, I really learned about some of
very little payout. The reason for all this hard work was made    the issues that affect many families with bleeding disorders
evident by walking the halls of Congress with dedicated and       including my own. There was a lot I did not know about
committed young people who were willing to take on challenges     lifetime insurance caps, Hemophilia treatment centers, and
with maturity well beyond their years. As we went through the     Medigap among other things, but I was also really glad
Legislative appointments, our “new attendees” Vanessa Ruiz,       to learn that I knew much more than I thought I did, and
Jeanette and Julie Cesta, and Lilliam Bervis started to share     better yet, that my knowledge and experiences with these
their life experiences with such honesty and ingenuity that       issues would come in handy while lobbying. At first I was
would bring down any barriers that may have existed.                    intimidated by the lobbying experience; I knew that
We had a chance to meet not only with the Aides but                       other team members had lobbied before, and some
with a couple of the Representatives themselves who                       knew our proposals inside and out. Maybe I did not
were more than happy to have a picture opportunity                        know as much as everyone else, but I did not need
with our young lobbyists. I would like to challenge                         to. I knew that these issues affected my family,
more young people to become involved; maybe                                   and I knew how. Lobbying was as simple as
next year could be “your” year!                                               telling my story. After a few meetings I learned
      All the details can be found on the National                            a great deal about our issues, so much that I
Hemophilia Foundation website: www.                                            started contributing my stories, feeding off of
hemophilia.org or the Hemophilia Federation                                       everyone else’s energy, and making points
of America website: www.hemophiliafed.                                                that were effective. I had a wonderful time
org. Contact your Representatives now.                                                  at Washington Days, but mostly I’m
It is never too late to advocate for our                                                   glad that I got the opportunity to help
own interests; you don’t need to go to                                                      raise awareness about these issues.
Washington to have a voice.
   WASHINGTON DAyS                                    The next day started bright
   By Jeanette Cesta                            and early with breakfast, then
                                                off on the busses to Capitol Hill.


   W
               ow – what an experience!         The day was spent meeting with
               My daughter, Julie, and          Congresspersons and their staff
               I attended the 2008              members discussing the issues to
   Washington Days for the first time           enlist their support in Congress.
   and it was incredible. Although Julie        Julie and I, along with others
   is only 7-years-old, she learned what        from the Florida Delegation,
   makes our country a democracy up             had meetings with the offices of
   close. We both had the opportunity           Senator Bill Nelson, Tim Mahoney,
   along with many others from                  Debbie Wassserman Schultz and
   across the country in our bleeding           Bill Young. We even got to speak
   disorders community to speak with            directly with Reps. Tim Mahoney
   Congress and Senate officials about          and Debbie Wasserman Schultz.
   the important issues affecting us            We found all of the meetings to be
   all, such as HTC funding, health             very productive and each person
   insurance caps and Medigap                   we met with seemed genuinely
   insurance availability.                      concerned and interested in
         Thanks to the Florida                  learning how they could help.
   Hemophilia        Association     for        NHF had us well prepared with
   sponsoring us. On Wednesday we               literature full of facts and call to
   flew up to D.C. and began with a             action materials so we knew just
   first time attendee orientation that         what concrete thing we needed
   outlined the next day’s events.              them to do to further our goals.
   Next, the evening continued with                   It was very empowering to           to be part of NHF, FHA and part
   a dinner reception and meeting               walk the halls of the Capitol and         of such a wonderful community,
   covering the topics to be addressed          to actually tell our stories of how       a community that even supports
   with the Legislators at the meetings         we are affected by our bleeding           a 7-year-old in her growth to
   the next day. It was also a                  disorders and the difficulties we         becoming a strong, healthy adult
   wonderful time to meet many new              face. Listening to my daughter tell       tackling the challenges she faces
   friends in the community as well             her story to the Representatives          living with a bleeding disorder.
   as learn more about the issues.              made me realize how lucky we are



Transplanted Liver Cells
Correct Hemophilia A in Mice
O
         n February 14, 2008, an international team                     Lead researcher, Dr. Sanjeev Gupta, explained the
         of researchers published the results of studies           next step is to study how this therapeutic approach could
         demonstrating the successful restoration of factor VIII   be developed for humans. “From the treatment point of
(FVIII) production.                                                view, we can now begin to direct our attention to these
      By transplanting functioning endothelial cells in the        particular cells and find the most effective way to cure this
livers of healthy mice to the livers of mice with hemophilia,      disorder in people,” he said. Gupta also suggested that the
the team was able to stimulate FVIII production to                 same protocol could potentially be used in hemophilia B,
levels that corrected previously uncontrolled bleeding.            or factor IX deficiency.
Endothelial cells line blood vessels and organs in the                  The study, “Transplanted Endothelial Cells
circulatory system. They provide an anticoagulant barrier          Repopulate the Liver Endothelium and Correct the
between the vessel wall and blood. It was reported that            Phenotype of Hemophilia A Mice,” was published in the
three months following transplantation, the number of              February 14, 2008, online issue of The Journal of Clinical
healthy endothelial cells in the mice had increased enough         Investigation.
to trigger the production of FVIII in amounts that corrected
their hemophilia.

                                                                                                          LIFELINE • SPRING 2008   7
    Mothers’ luncheon continued from Page 1

    was upon discharge that I became hit with this information.     this community. I remember speaking with Debbi, she was
    Questions about which HTC center I regularly visited,           the first mother that I had the pleasure of sharing with,
    arrangements for home health care, phone calls welcoming        and share she did. I know I left that conversation with a
    me to the Hemophilia Society…what? What was that last           page full of notes and a sense of direction on which steps
    one? Is Isaiah a hemophiliac? Everyone seemed to be under       to take next. As an educator and behavioral therapist, I am
    the assumption that, as per his diagnosis, I was completely     constantly searching for resources to give to my parents
    familiar with the standard procedures, the terminology and      and families. That is not the case in this community. I have
    the precautions that were being taken. What a whirlwind!        never seen an organization of people just so willing to pour
                                                                    out resources and information as I have experienced. It has
                                                                    truly been a blessing to find an organization like the Florida
                                                                    Hemophilia Association.
                                                                          So again, I say it was with immense pleasure that I
                                                                    had the opportunity to finally meet and mingle with some
                                                                    of the strongest women, mothers, in South Florida. I look
                                                                    forward to many encounters in the future as we welcome
                                                                    newer mothers and bless them with the encouragement
                                                                    that you all have given me. Happy Mother’s Day Ladies!!




    I distinctly recall receiving a phone call from a dear friend
    that afternoon and just breaking down. Taking breaths
    through tears, I mumbled about a huge box of supplies that
    had just been delivered, realizing that this was a chronic
    condition. I just felt completely overwhelmed.
          Overwhelmed - I can now use that word in a
    positive light. From that moment forward, I have been
    overwhelmed with the outreach that I have received from

    executively speaking continued from Page 1

    this tournament. Ways to help include getting raffle and        small amount and then must be bed ridden for days so not
    auction items, soliciting sponsors, getting golfers, media      to continue bleeding. Dr. Narayan showed me a photo of
    exposure, etc.                                                  his son and other boys in his town and it just broke my
          Lastly, I wanted to mention a recent visitor to the       heart. So many of them had deformities and were crippled
    Association. I had the great pleasure of meeting with           because of not being able to infuse on a regular basis. He
    Dr. N. Venkata Narayana from the Hemophilia Society,            said “It is just too expensive to buy factor, even though I
    Hyderbad Chapter in India. Dr. Narayan was visiting a           make a pretty decent living as a college professor.” “Even
    family in Miami and came by to learn more about our             when we do get some it’s just a small amount.”
    chapter. Like me, he became involved with his chapter                That evening I went home and told Corey about the
    because of a child affected with severe hemophilia.             meeting with Dr. Narayan. We talked about how lucky
    We talked about what it was like raising a child with a         we are and how we sometimes take things for granted.
    bleeding disorder. Unfortunately, our experiences with          Of course, I told him that the next time he whined about
    hemophilia were somewhat different.                             having to do factor he should remember the people less
          My son Corey, now 14-years-old, has had an                fortunate.
    opportunity to live a typical life with complete access
    to healthcare and factor. He does everything any normal              Sincerely,
    teenager does and more! I felt somewhat humbled as Dr.
    Narayana spoke about the struggles of his 22-year-old son
    with hemophilia. He explained “Since there isn’t a great
    supply of clotting factor they must always ration the doses          Debbi Adamkin
    by just giving small amounts.” His son will infuse only a            FHA Executive Director


8    SPRING 2008 • LIFELINE
 New Recombinant Factor IX Drug Receives
 FDA Approval for Clinical Studies
 B
         iovitrum AB and Syntonix Pharmaceuticals received                   “Hemophilia is a prioritized therapeutic and business
         U.S. Food and Drug Administration approval to                 area within Biovitrum,” said Martin Nicklasson, CEO of
         begin phase I/IIa clinical studies to measure the safety,     Biovitrum. “We are excited to develop FIXFc with Syntonix
 tolerability and pharmacokinetics of their recombinant                because we believe that the company’s SynFusionTM
 factor IX (FIXFc) drug in previously treated patients with            technology has resulted in a very promising, long-acting
 hemophilia B. The pharmacokinetic portion of the studies              recombinant Factor IX product opportunity that has the
 will focus largely on the product’s half-life. Extending the          potential to reduce the frequency of infusions required for
 half-life of the product could allow for less frequent infusions      hemophilia B patients to manage their disease.”
 for individuals with hemophilia B, whether they are treating                Biovitrum has headquarters in Sweden and the United
 prophylactically or episodically, as bleeds occur.                    Kingdom. Syntonix, a wholly-owned subsidiary of Biogen
       Syntonix’s technologies employ therapeutic proteins,            Idec, is based in Waltham, MA. The two companies
 peptides and antibodies to help create longer-acting                  first entered into a co-development and commercialization
 biopharmaceutical therapies to treat chronic disorders such           alliance to develop FIXFc in January 2006.
 as anemia, multiple sclerosis and autoimmune disorders.                     The only recombinant factor IX product currently
 Biovitrum develops and manufactures protein-based                     available in the U.S. is Wyeth Pharmaceutical’s BeneFIX®.
 therapies for common diseases and those affecting smaller
 populations.




 Wyeth Announces FDA Approval
 of Recombinant Factor VIII Drug
 W
             yeth    Pharmaceuticals               XYNTHA™ undergoes a purification                 The safety and efficacy of
             announced that it received            process without the use of human-          XYNTHA™ were established through
             approval from the U.S.                or animal-based proteins such as           clinical trials. Side effects included
 Food and Drug Administration for                  monoclonal antibodies, which are           hypersensitivity reactions, such as
 XYNTHA™ [Antihemophilic Factor                    often taken from mouse cell lines to       hives, wheezing and anaphylaxis.
 (Recombinant), Plasma/Albumin-Free],              make fVIII products.                       The company says that trace
 a recombinant factor VIII product, for                 “XYNTHA™ is important                 amounts of hamster protein used
 patients with hemophilia A for the                for hemophilia A patients because          in the processing of the drug could
 control and prevention of bleeding                it establishes a new standard in           contribute to allergic reactions. Of the
 episodes and surgical prophylaxis.                recombinant factor VIII product            89 patients in the trial who completed
 XYNTHA™ is manufactured without                   purification technology,” says Robert      50 exposure days of the product, two
 albumin, a soluble protein found in               R. Ruffolo, Jr., PhD, President,           developed an inhibitor.
 the blood that is sometimes used in               Wyeth Research, and Senior Vice            Source: Wyeth press release dated February
 the production of factor VIII (fVIII).            President, Wyeth.                          21, 2008



      Non-injectable Factor IX                                              BlEEDING DISORDER
      on the Horizon?                                                       HOTlINE
            Nastech Pharmaceutical Company, Inc., has begun                        Looking for answers to your questions regarding
      a feasibility study with an undisclosed global leader in the          insurance changes, reforms, restrictions and general
      production of plasma products. The study will examine the             information – call the Bleeding Disorder Hotline
      possibility of developing an alternative delivery method of           toll free at 800-520-6154. The hotline was
      factor IX without an injection. Visit www.nastech.                    initiated by the Lone Star Chapter of NHF and is funded
      com for more information.                                             by Baxter.



10   SPRING 2008 • LIFELINE
FHA ResourceCenter
MIssIon sTATeMenT
The Florida Hemophilia Association, Inc. is a Not-For-Profit organization, that exists to promote opportunities for
improving the quality of life for all persons with hemophilia and related bleeding disorders throughout the state of
Florida. The ultimate aim is a cure.

      HeMoPHIlIA ClInICs                         university of Florida Department of               university of Miami
                                                 Medicine Adult Hemophilia                         Department of Pediatrics
All Children’s Hospital                          P.O. Box 100277 Gainesville, FL 32610,            1611 NW 12th Avenue
Department of Pediatric Hematology/              Phone: (352) 392-3000                             Building ACC West, 5A
Oncology                                                                                           Miami, FL 33136
880 6th Street South, Suite 140                  nemours Children’s Clinic, orlando                Phone: (305) 243-6925
St. Petersburg, FL 33701                         Department of Pediatric Hematology/
Phone: (727) 892-4176                            Oncology                                          university of Miami
                                                 83 West Colombia Street                           Adult Hemophilia Program
Joe diMaggio Children’s Hospital                 Orlando, FL 32806                                 1611 NW 12th Avenue
Pediatric Specialty Center                       Phone: (407) 650-7230                             Building ACC West, 3A
1150 N. 35th Avenue, Suite 520                                                                     Miami, FL 33136
Hollywood, FL 33021                              sacred Heart Pediatric Hemophilia                 Phone: (305) 243-6925
Phone: (954) 986-2234                            Program, Pensacola
                                                 Phone: (850) 416-7712                             usF Adult Hemophilia Center
lee Memorial Hospital                                                                              Department of Pediatric Hematology/
2776 Cleveland Avenue                            Tampa Children’s Hospital at st.                  Oncology, Hospital Hematology
Ft. Myers, FL 33901                              Joseph’s Department of Pediatric                  111-R 1300 B.B.Downs Blvd.
Phone: (239) 332-1111                            Hematology/Oncology                               Tampa, FL 33612
                                                 3001 West Martin Luther King Blvd.                Phone: (813) 972-7582
nemours Children’s Clinic, Jacksonville          Tampa, FL 32607, Phone: (813) 870-4824
Department of Pediatric Hematology/
Oncology                                         university of Florida Department of
807 Children’s Way                               Pediatric Hematology/Oncology
Jacksonville, FL 32207                           P.O. Box 100296 Health Science
Phone: (904) 390-3789                            Center, Gainesville, FL 32610
                                                 Phone: (352) 265-8250



2008 Hemophilia                                        HFA staff and the Board of Directors
                                                                                                   (ADA), and the always informative sessions
                                                                                                   about going to emergency rooms, pain
Federation of                                    received a “thumbs up” gesture for a well         management and dental care for persons
                                                 organized symposium from all of its attendees.    with bleeding disorders. The ballroom was
America (HFA)                                    The symposium offered an excellent                not big enough to accommodate an attentive
                                                 selection of activities for all which included    audience for a favorite session, Therapy
Annual Meeting                                   topics such as Enduring the Dynamics of           Advances, which captivated us with the
and Educational                                  Living with a Chronic Bleeding Disorder,
                                                 Healthcare Delivery Today and in the Future,
                                                                                                   newest and latest therapies pharmaceutical
                                                                                                   companies are working on.
Symposium                                        Insuring Survival, Employment Application               Teenagers in attendance had the
                                                 and the ADA, Navigating the E.R., Navigating      opportunity of the first time ever overnight
May 1-4, 2008 little Rock,                       Pain Maze and Navigating Dental Care. The         camp. They departed on Friday morning for
Arkansas                                         diligent selection of the panelists made by the   an overnight camp at the Heifer Ranch 45
                                                 Symposium Committee offered all attendees         minutes from Little Rock. The ranch offered
Submitted by Carlos Ruiz                         a variety of discussion topics which lead         the teens a hands-on experience about
                                                 to room-full audiences that asked lots of         farming and ranching.
      “WOW!”, “What a week that was!”,
                                                 questions. Subject matter expert panelists              To close the symposium, break out
“That was just an unforgettable experience
                                                 presented their thoughts about topics such        sessions offered an insight of HFA’s programs
for the teens!”, “Did you see the march of the
                                                 as the future of hemophilia, insurance issues,    such as HFA Dads in Action, HFA Focus on
ducks inside the hotel lobby?” These were
                                                 strategies for seeking employment with a          the Feminine- “Let Me Guess… Too Much
some of the comments made by attendees to
                                                 watchful eye in the American Disabilities Act     Stress”, and HFA Blood Brotherhood.
the symposium.


                                                                                                                     LIFELINE • SPRING 2008   11
 Genetic Information
 Nondiscrimination Act Passes
 in House and Senate
       On Thursday, May 1, 2008, the United States House of
 Representatives passed the Genetic Information Nondiscrimination Act
 (GINA, S. 358) by a vote of 414-1. A week earlier, on Thursday, April 24,
 2008, the United States Senate passed the bill by a vote of 95-0. The
 passage of this historic legislation follows a 13-year effort by a broad
 coalition of grassroots organizations, including in recent years, the
 National Hemophilia Foundation (NHF).
       The bill prevents employers and insurance companies from
 requesting genetic testing or information and from discriminating
 against someone because of his/her genetic status for the purposes
 of employment or insurance coverage. It only applies to people who
 have tested for specific genetic markers, not those who have been
 diagnosed with specific conditions. However, it helps individuals make
 proactive decisions about genetic testing and counseling without fear
 of certain negative consequences, including employment or insurance
 discrimination.
       The White House has signaled its willingness to sign GINA into
 law; a signing ceremony is expected shortly. Once that happens, it will
 be important to educate all affected groups and individuals about the
 implications of the new law, and to be vigilant about its observance.

 Obtained from NHF Website




                                                                             FIRST CLASS PRST.
                                                                             U.S. POSTAGE PAID
                                                                                 TAMPA, FL
                                                                              PERMIT NO. 3239
Florida Hemophilia Association
(Formerly known as Florida Chapter, NHF)
18001 Old Cutler Road, Suite 501
Palmetto Bay, FL 33157




12   SPRING 2008 • LIFELINE

				
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