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FARAFARA Cure FA

These families who share a rare disease just gathered for an international reunion. It may speed along a cure.


LAPORTE, INDIANA — The first time Jake Tompkins knew something was wrong was when he fell off a stage. He was a touring musician, playing bass guitar. During a club show in Oakland, he couldn’t understand why he couldn’t keep his balance, or why his brain would tell him to play one note and his fingers would play another.

Then he hit the floor. “People thought I was drunk or on drugs,” he said. It was neither. Tompkins had Friedreich’s ataxia (FA), a rare degenerative neuromuscular disorder that affects about one in 50,000 people in the U.S.

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