Shandra Trantham was just 9 years old when she first knew something was wrong. She remembers arriving at gymnastics camp one morning and realizing she could no longer walk across the balance beam. Her parents initially thought she was just clumsy, but soon Shandra was unable to run a mile in P.E. class. By the time she started middle school, she'd developed scoliosis (a curvature of the spine) and was struggling to walk a straight line. "It just got worse from there," she says. At age 12, she was diagnosed with Friedreich's Ataxia (FA), a debilitating – often fatal – neurodegenerative disease that attacks the nervous system, causing muscle weakness and loss of coordination. Ultimately it can rob patients of the ability to walk and talk, before eventually attacking the heart.
Devastated by the diagnosis – and worried how Shandra would take the news – her parents, Linda and James Trantham, decided not to tell her right away. "It was just so shocking," says Linda, 65. "I didn't want her to come crashing down like that."
But Shandra had already figured it out on her own. "I was a pretty smart child," says the 24-year-old Gainesville, Fla., resident. "I looked extensively on the Internet about my symptoms, and when I was 13, I figured out that I had FA. I remember being at the doctor's, and I saw the name on my chart, so I knew I was right."
She's been on a mission ever since to find a treatment for FA – which affects 150,000 people in the U.S. and is caused by a genetic mutation inherited from both parents. "Patients with FA, especially when they have childhood onset, have progression over time," says Dr. Barry Byrne, director of the Powell Gene Therapy Center at the University of Florida, who first met Shandra in 2017 when she was a participant in a research study on the disease. Now a Ph.D. candidate at UF, Shandra works under Byrne conducting gene therapy research, with the goal of ultimately developing a genetic treatment for FA that will stop the disease's progression. "I knew that if I really wanted to help people with my disease and other incurable diseases, I had to go into research and focus on solving the problem," she says. Adds Byrne: "Having Shandra right there in the middle of the lab is a constant reminder to everyone of why we need to work with urgency."  
Growing up in Jupiter, Fla., Shandra kept her FA a secret from friends. "I would avoid situations where it was obvious that I had something wrong with me," she says. "I never went on school trips to theme parks because that involves a lot of walking…My friends just assumed I was a really clumsy person. I would fall a lot. I had a lot of injuries. I always had some kind of brace on." When she was 16, her mother finally opened up to her daughter about her diagnosis. "Until then, we didn't talk about it at all," says Shandra. "When my mom finally came to me, I was like, 'I already know.' " But Linda credits her daughter with taking hold of her situation and ultimately finding her purpose. "I somewhat regret [not telling her right away], but in some ways I think it made her a stronger person, actually finding out herself," she says. "When we got that diagnosis, it was like a death knell almost. Now it's been totally different. And a lot of that's due to Shandra and her personality and how she's dealt with it."
By the time Shandra was a freshman at the University of South Florida, she knew she wanted to "learn everything I could about my disease." She majored in cellular and molecular biology, completed her four-year B.S. degree in just three years and applied to participate in FA research programs whenever she could. "I'm on the clock with my disease, so I knew I wanted to get everything done while I was still capable," she says.