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Tampa at center of research to cure rare disease

11:47 PM, Sep 7, 2013   |    comments
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Tampa, Florida - It's a disease that affects about 1 in 50,000 Americas, and just 15,000 worldwide, and the effort to cure it is strong in the Bay area.

A fundraiser was held on Saturday night at the A La Carte Event Pavilion in Tampa for research pursuits to cure Friedreich's Ataxia. It is a debilitating, life-shortening, degenerative neuro-muscular genetic disorder. The symptoms typically begin to manifest in children between the ages of 5-15 years-old.

"My skills were going downhill and at age 14, 15 you should be doing nothing but improving," said Kyle Bryant, who was diagnosed at 17, later than most.

When he discovered he had the disease, not much was known about it and it took several doctors to figure out what was wrong.

"My dad convinced the rest of that we needed to go look for answers because something's wrong here," he said.

After working in the field of civil engineering for several years, Bryant decided to devote himself full-time to raising awareness of Friedreich's Ataxia. He is now spokesperson for the Friedreich's Ataxia Research Alliance, which put on Saturday's fundraiser to benefit FA research.

While several of them are held around the country every year, the Tampa fundraiser makes up 1/3 of the yearly FARA budget. At FARA Energy Ball 2013, dozens of items were auctioned off with the proceeds going to research.

Tampa has also become a hub for finding a cure for a disease that was only first discovered in 1996.

"Tampa Bay has become an epicenter for finding a cure. USF is involved, there's trials going on, and tonight is the largest fundraiser in the nation for this cause," said Tod Leiweke, CEO of the Tampa Bay Lightning.

Leiweke has been an honorary board member with FARA for the past three years.

Back in January, USF started a year-long research trial that involved 20 participants. It is for that reason that suffers like Kyle Bryant believe a breakthrough is close at hand.

When asked if he thinks a cure will be found in his lifetime, Kyle said, "I absolutely think it will be done in my lifetime."

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