When Linda Snider was 10 years old, her dad starting showing symptoms of spinocerebellar ataxia type 1 (SCA1), a disease that would ultimately claim his life.
“He slowly lost his identity,” Snider recalls. “He went from not being able to dress himself, to not being able to walk or feed himself. In the end, he couldn’t talk.”
Snider knew she had a 50/50 chance of developing the hereditary form of ataxia. When University of Minnesota scientist Harry Orr, Ph.D., a professor in the Department of Laboratory Medicine and Pathology and holder of the Bob Allison Ataxia Research Center Chair, discovered the gene that causes SCA1 in 1994, Snider was one of the first to be tested; at 21, she was told she had inherited the gene.
“I had just started medical school,” she says, “and they were telling me I’d be in a wheelchair by the time I was 40. Suddenly my whole future was about having this disease.”
Or not. Snider, now 45 and not in a wheelchair, says she lives a “full and meaningful life.” She chose radiology, a specialty she felt she could manage from a wheelchair, and practices in Omaha, Nebraska, where she lives with her partner, Mark Sidwell. She travels. And she stays enthusiastically positive.
She fights back not only for herself but also for others touched by ataxia. It was Sidwell’s idea to start an ataxia support group in Omaha, a concept that’s blossomed into regular monthly meetings that alternate between social outings and educational sessions.
Next came the nonprofit Nebraska Ataxia and its fundraiser, which brought in $100,000. Part those proceeds supported Orr’s research at the University of Minnesota.
While she loves her home state, Snider heads to the U for health care. She’s a regular at the Ataxia Center, where she sees neurologist Khalaf Bushara, M.D., and, occasionally, her distant relative Lawrence Schut, M.D., whose Minnesota family is inextricably linked with SCA1. But why travel to Minnesota when she’s well connected in the Omaha medical community?
“Because it’s the best,” Snider says. “The doctors and support staff there understand this disease better than anyone else in the world. I’ve been going to the U since I was 16, and I’ll always go there because both the care and the research are cutting edge.”