Inspiring People: Naples teen raises money for muscular dystrophy cure

Reporter: Lindsey Sablan Writer: Joey Pellegrino
Published: Updated:

Facing a life-changing diagnosis, a Naples teen is motivating our community to help find a treatment or cure for a serious illness in four short years.

At 13, doctors diagnosed Heloise Hoffman with facioscapulohumeral muscular dystrophy, meaning her muscles are deteriorating. Each case is different, so she doesn’t know which muscles will fail or when. And right now, there’s no treatment or cure.

“Today, I can’t raise my arms above shoulder level,” Hoffmann said. “I can’t play any sports because the problem with FSHD is that once you burn the muscles, they’re not coming back.”

But this Saturday, Hoffmann is hosting the first in-person Southwest Florida Walk and Roll to raise money to find a cure. Over the summer, in fact, Massachusetts-based Fulcrum Therapeutics just completed a phase IIb clinical trial of a drug for FSHD, and the results are very promising.

WINK News’ partners at Gulfshore Life featured Hoffmann in September’s issue of the magazine. You can find all the details about the SWFL Walk and Roll and how to donate here.

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