The Hemophilia Foundation of Greater Florida (HFGF) is pleased to announce the distribution of $37,750 to 20 residents with bleeding disorders who will be attending college in the fall.
The Calvin Dawson Memorial Scholarship, named in honor of founder and first executive director of the HFGF, has been assisting those in the bleeding disorders community reach their higher education objectives for the past 20 years. Since the scholarship’s inception, HFGF has granted more than $150,000 to worthy recipients.
“We are delighted to honor these 20 men and women who have aspirations to be the best they can be,” says HFGF Executive Director Fran Haynes. “Ninety-one percent of all HFGF fundraising dollars go back to our bleeding disorders community, including our provision for annual scholarships of which we are quite proud.”
HFGF scholarships are earmarked for Floridians with hemophilia, von Willebrand disease and other related hereditary bleeding disorders. Scholarships are attainable for high school graduates pursuing post-secondary education at a college, technical or trade school, or through other certification programs. Awards are based on merit, need, community service, and aspirations of the applicant as reflected in an essay.
Only two recipients are attending out-of-state schools—Vanderbilt and Syracuse—while the remainder, including Andrew Farren of St. Petersburg, remain in state.
"Receiving the HFGF scholarship means I am one step closer to achieving my dream of becoming a physician,” says Andrew, who is entering his second year at St. Petersburg College before transferring to the University of South Florida after receiving his Associate’s Degree. “I’m thankful for the support this Foundation has given me and my family throughout the years, and I hope to someday inspire others like myself to pursue their aspirations."
For a complete list of scholarship recipients and the schools they will be attending, please visit http://www.hemophiliaflorida.org/scholarships.html
2018 HFGF Calvin Dawson Memorial scholarship recipients and the college they are attending are:
Judge not, that ye be not judged.
While there are various interpretations of that biblical quote, the idea of those seven simple words should be engrained in our collective psyche. The same goes for the modern version: don’t judge a book by its cover. As a rule, we have no idea what that woman or that guy or those kids are going through as we encounter people in our daily lives.
Those afflicted with invisible disorders and diseases understand this all too well. From hemophilia and diabetes to fibromyalgia and autoimmune diseases such as Myasthenia Gravis, many people suffer alone, or simply amongst loved ones. On the surface, these men, women and children show no outward signs of a disorder; they appear to others like everyone else.
Hemophilia, a bleeding disorder that affects an estimated 20,000 people in the United States, is a prime example of a disorder that appears invisible on the outside, but requires regular treatments to properly clot blood and keep patients healthy and alive. While there may not be a cure, members of the bleeding disorders community can live long, healthy and productive lives.
Approximately 400 babies are born with hemophilia annually, or one in 5,000 births. Others develop the disorder through a spontaneous gene mutation.
“People with hemophilia may look physically fit, but they could be having an internal ankle bleed,” says Fran Haynes, executive director of the Winter Park-based Hemophilia Foundation of Greater Florida (HFGF). “Just because you can’t see it, doesn’t mean it does not exist.”
Sometimes, if there is extreme debilitation from a breakdown in the protective tissue inside a joint from an internal bleed, this can lead to limited movement, displaying outward signs of the disorder. Baby Boomers, who grew up in an age when hemophilia treatment was sketchy, may walk with a limp due to permanent joint damage caused by improper treatment. But for the most part, hemophilia is invisible.
The lack of knowledge associated with the disorder, its makeup, prognosis and treatment does cause a great deal of aggravation and frustration in the bleeding disorders community.
“There is a stigma that comes with having a blood disease,” says Samantha Nazario of Melbourne, whose 18-year-old son was diagnosed at Arnold Palmer Children’s Hospital with von Willebrand disease, a milder, more common blood clotting disorder, when he was 6. “I have to tell people, ‘no you can’t catch it.’”
Fran says because of the lack of knowledge about bleeding disorders in schools and the workplace, tool kits are available to those with hemophilia. For school-aged children, a kit provides a PowerPoint presentation for parents to show when meeting with school personnel to both educate, and help remove some of the stress and worry for both parents and teachers.
For those in the workplace, a toolkit aids in explaining the rights of an employee with a bleeding disorder, including disclosure of the disorder, insurance information and laws designed to protect such workers.
A Circle of Invisibility
Unfortunately, myths and misconceptions of hemophilia feed into the invisible disease narrative. Members of the bleeding disorders community tend to hide their disorder from all but close family and friends, electing to conceal the truth for fear of isolation or judgement. Sometimes it is just easier to live day-to-day void of stigmatized rhetoric and ignorance. The invisible disease, indeed, becomes more invisible.
“It is a hard disorder to explain,” Fran notes, “and it gets exhausting to explain it over and over.”
Part of the HFGF’s mission is to educate and advocate on behalf of those with bleeding disorders. The organization is built on the premise of not only supporting patients and families with bleeding disorders, but enlightening the public and dispelling myths.
HFGF social worker Dina Richardson, LCSW, says because it is such a rare disease, most people have not been exposed to hemophilia, which perpetuates the frustration and invisibility. Nevertheless, some people with the disorder want the world to know.
“Either people wear it on their sleeve and are open about it, or they like the fact that people don’t know,” Dina says.
For those who want to talk about life with hemophilia, the Foundation has produced “Voices of HFGF,” real stories from real people to help better educate the masses. By telling their stories, those afflicted are helping to change the culture to one in which conclusions are based on knowledge, and judgements held for the educated.
The Hemophilia Foundation of Greater Florida, a Chapter of the National Hemophilia Foundation, has been helping people with bleeding disorders since 1996. We have helped the bleeding disorders community improve their quality of life by offering programs and services to support healthier and more independent lives.
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