The Snow Foundation

The Snow Foundation is a nonprofit organization dedicated to improving the lives of people affected by Wolfram syndrome, a rare genetic disorder that can cause diabetes, vision and hearing loss, and progressive neurological complications. Founded by Stephanie Snow Gebel and her brother, former professional baseball player J.T. Snow, after Stephanie’s daughter was diagnosed, the Foundation serves as a collective voice for patients and families. It supports research and international collaboration aimed at advancing effective treatments and, ultimately, a cure.

The Foundation also helps people affected by Wolfram syndrome find practical information, care guidance, and community. Its website offers resources including clinical guidelines, symptom and diagnosis information, research updates, articles, and details about clinical trials. Families can connect with others through community resources and events, while healthcare professionals and researchers can access information about the disease and ongoing studies. The Snow Foundation raises funds through donations and mobilizes its global community to accelerate research, share knowledge, and support healthier, more fulfilling lives for people living with Wolfram syndrome.