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Suncoast ALS patient on a mission to find a cure

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Posted: Wednesday, May 8, 2013 9:40 pm | Updated: 9:03 pm, Wed Jun 5, 2013.

BRADENTON - Southeast High School grad Kevin Swan was only 30 years old when he was diagnosed last year with ALS, or Lou Gehrig's disease. But as his high school classmates will tell you, Kevin is not one to go down without a fight.

ALS is a progressive, fatal neuromuscular disease. The life expectancy after diagnosis is about 2 to 5 years. There's no known cause or cure. But Kevin says his life will not be defined by the disease.

He has formed the A Life Story Foundation to fight back, and they're having their first fundraiser this weekend. "It's going to be a great night of celebratory gambling…fake gambling. We got craps and blackjack and roulette, and it's all going to benefit Life Story Foundation,” says Swan.

Kevin created the foundation to raise awareness and funds in the fight against ALS. "The foundation is working closely with an organization in Boston called ALS TDI, Therapy Development Institute. And that's where the money that we raise gets allocated to research. We partner with them; their sole purpose, the only reason they're in existence is to find a cure for ALS," says Jolie Swan, Kevin’s mother.

But research is expensive. "Just one mouse to do the testing for ALS is $1,000. So think of all the mice they need to actually do any type of sustainable sizeable testing,” says Jolie.

Kevin is putting the same determination and perseverance into fighting ALS that he put into football at Southeast High. He made a lot of friends back then. "Kevin was always active, funny, owned the room when he walked into it, and has always had a great circle of friends he has stayed in touch with and has been a great support to both Kevin and myself."

And those friends are now supporting Kevin's foundation and helping him make a difference. “I've got this great support system of friends and family, and I just choose not to let this define me," says Kevin.

Kevin's mother says he's got what it takes to succeed. "He has the ability to bring people together. He's a connector, he's a communicator, and I think a leader."

All In for ALS Casino Night is Friday night at the Lake Club in Lakewood Ranch.

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