24-Year-Old Researches Treatment for Her Own Crippling Disease: ‘I’m in a Race Against Time’

Shandra Trantham has Friedreich’s ataxia (FA), a rare genetic disease that is slowly robbing her of the ability to walk and talk

What Florida native Shandra Trantham dreams of most is running on a sandy beach into the ocean. “I see other people doing that and it’s like a movie moment,” she says. “I really want to experience that. I know I did it when I was younger but I wasn’t appreciating what it felt like. I actually did have two of my friends hold my arms while I ran once, but it was really hard and it hurt.”

Unless a new treatment is found, the 24-year-old may never take that exhilarating plunge again. Trantham has Friedreich’s ataxia (FA), a rare genetic disease that is slowly robbing her of the ability to walk and talk, and can also affect her heart. FA is caused by an inability in the body to make frataxin, a protein that is necessary for normal cell function. To date, there is no cure and no approved treatments — but she’s working on one. She’s a 4th-year Ph.D. candidate in genetics and genomics at the University of Florida Powell Gene Therapy Center. Trantham works in a lab where gene therapy for FA is being fine-tuned. The great hope is that one infusion of a synthetic gene that makes frataxin will stop the progression of the disease permanently. It can’t come soon enough for her.

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