A Kansas man with a rare disorder spent decades advocating for gene therapy. It may never help...

Donavon Decker became, in more ways than one, an ambassador of limb girdle muscular dystrophy type 2D, a degenerative disorder. But decades after he participated in patient trials and fundraised for research, drug companies are still nowhere close to a cure.
In the summer of 1999, a soft-spoken air traffic control specialist from South Dakota named Donavon Decker captured national attention when he signed on for a patient trial testing the safety of a potential breakthrough treatment for a form of muscular dystrophy.

On the Muscular Dystrophy Association telethon — hosted by comedian Jerry Lewis — in USA Today and in news outlets across the country, Decker told his story.

He was born with a degenerative disorder called limb girdle muscular dystrophy type 2D, which affects just three or four people in 1 million. It gradually weakens patients’ muscles and caused Decker to walk with a gait.