Conquering Life with a Rare Disease

When Sean Baumstark was 25, he was diagnosed with Friedreich’s ataxia, a rare, debilitating and life-shortening disease. His doctor advised him to avoid activities where balance was critical, such as biking, hiking, or running. He told Baumstark he should move to a home without stairs and install handrails. A month later Baumstark bought a bike and set off on a 650-mile trek from his home in Sacramento to Las Vegas. Among the many things he does today, his De:terminence program provides people with rare conditions training, assistance, and equipment to complete challenging physical feats, such as climbing mountains or running in marathons. We spoke to Baumstark about his own rare disease diagnosis, how it became a turning point in his life, and how he learned to embrace life so fully.