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News
Representing the Florida Hemophilia Association in Washington, D.C.
by Amelia Tejiram, age 10
As a carrier of Hemophilia (my dad is Hemophilia A Severe) I have a lot of limitations to many physical activities such as cheerleading, certain dancing, football and more physical activities due to getting hit or having a bleed. Sometimes I felt sad seeing some of my friends do sports I couldn’t do I felt left out. But I mostly feel bad about the kids with severe Hemophilia; they can’t do even half as many sports as I could do, and having their parents be more overprotecting then my parents!
Many severe hemophiliacs and carriers some times have to take factor, mostly on a regular basis which is really expensive. Thanks to the Washington trip the Florida team was able to let the government know what they needed, and hopefully something good can happen to help the association in the future. When the Florida team was at the capital, we talked to the government (including myself making the opening speech) to help raise the minimum lifetime cap for private insurance to 10 million dollars. This is currently at 1 million. This is not enough, taking into consideration the rising cost of today’s medications! Also, I was able to talk to them about my point of view as a carrier of hemophilia, and how difficult it can be growing up as a carrier.
The Washington trip itself was wonderful, the hotel was elegant and fancy, and I thought I was being treated like a princess! Being at the capital was a historical event for me, walking through the hallways, of the senate building gazing at the ceilings which has the many paintings of the American history, talking to legislators and representatives of Florida, and also stopping a few politicians in hallways to introduce myself and take pictures. This trip has encouraged me and has been an honor to be there, and I am very grateful for being part of the Florida team representing the FHA. It has encouraged me to be more involved and learn more about Hemophilia, and maybe one day my dream of becoming a Hematologist will be a reality. So I could help other kids like myself with bleeding disorders.
Washington itself is a wonderful and historical place, full of wonder and history and I hope the Florida team will go back again to talk to the government more about Hemophilia!
Amelia Tejiram, Tampa, Florida |
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Executively Speaking
Spring is here and so are the heat and the humidity! We have had such pleasant weather over the past several months so I guess I shouldn’t really complain. There will be many wonderful events to attend, throughout the next several months, and we hope everyone will take advantage of a majority of these opportunities. The first event to kick off the spring season will be our Annual Mother’s Focus Brunch on May 17, in South Florida. This affair is designed for all mothers, grandmothers, and caregivers who have children with hemophilia and bleeding disorders. The Mother’s Brunch includes a day of fun, delicious food, and a chance to network with other individuals in the community. On another note, the Tampa/St. Pete brunch has been postponed until sometime in June, but the new date will be posted on our website.
Let us face it, we all could use some tips on eating healthier, and on June 13, an event called “Lighten Up Program,” will be held in collaboration with the University of Miami and the Fort Lauderdale Culinary Art Institute. You do not need to be an aspiring chef to attend, just be interested in eating a little healthier. Chef Jack and his students will prepare your favorite recipes, showing you how to cook them lighter and healthier! Everyone who attends the Lighten Up Program will receive an apron and a cookbook, and Dr. Joanna Davis will present a nutrition talk.
On June 19 and July 17, an unforgettable event will be taking place in Key Largo. “Fonzies Swim with the Dolphins” will take place on both of these dates. This is a once in a lifetime opportunity and it’s a great way to start the summer time. Remember space is limited, so call to reserve a spot, before it fills up!
Finally the event we all look forward to, July 31-August 2 is the 26th Annual Family Education Symposium at the newly renovated Embassy Suites Deerfield Beach Resort. At this time, we are in the process of planning another great meeting. If you would like to lend a helping hand and be on the planning committee, please let us know. Registration forms for the meeting will be in the mail by the end of May, so do not forget to check your mail! If you plan to attend the Symposium, please be sure to fill out the registration form and send it in as quickly as possible because space is limited.
As always, we welcome everyone to get involved in the chapter and I encourage you all to volunteer in any capacity possible. Call today to find out how you can help the association at 888.880.8330.
I look forward to seeing you at our next event.
Happy Spring,
Debbi Adamkin
FHA Executive Director |
