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FARAFARA Cure FA

Pasco family deals with rare disease as community rallies around seven-year-old

What's this -- an impromptu line dance breaks out at a service sorority luncheon in Wesley Chapel. As members get up and move to honor a little boy named Gavin -- who at this point, can join them. But if his rare disease continues to progress, he could be forced to sit and watch. But these folks are not about to let that happen.

"We are spreading the word on rare disease day," said Dawn Lambert, Gavin's Mom. "Helping FARA spread the word by wearing these bibs for everyone to see that there is 15,000 people that suffer from the disease Friedreich's Ataxia ."

FARA -- is the Freidreich's Ataxia Research Alliance, studying the neuromuscular disease that affects 1 in 15 thousand people. Gavin the one diagnosed with it when he was just five. Now seven, Gavin and his family were here for the "Move Your Way" event on Saturday, and they'll be moving even more this upcoming week… including the 28th, which has been tabbed "rare disease day."

Read More: Pasco family deals with rare disease as community rallies around seven-year-old

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