About the Foundation

Our Mission

The Snow Foundation is a collective voice for Wolfram syndrome patients, working towards a cure for Wolfram syndrome and developing novel therapies for diabetes, vision loss, hearing loss, and neurodegeneration.

Rare Diseases…Common Problems

Who We Are

Raquel-and-StephanieIn fall of 2010, Raquel Gebel, the five-year-old daughter of Stephanie Gebel, was diagnosed with Wolfram syndrome. When Stephanie learned that there were no foundations or associations representing this disease, no drug therapies or cures that exist to treat Wolfram syndrome, she knew she had to do something. The Foundation’s primary purpose was to serve as a collective voice for Wolfram syndrome patients and to raise money to help find a cure.

The Snow Foundation has expanded its mission over the last nine years and is now leading a global movement of patients, families, doctors, and researchers who work together to improve the lives of everyone affected by Wolfram syndrome. The Foundation’s vision is bold: a world free of Wolfram syndrome.

The Snow Foundation accomplishes its mission by making significant investments in promising Wolfram syndrome research, as well as providing critical programs and services that directly improve the lives of patients and their families.

The Foundation has three strategic pillars guiding its impact:

1

Accelerate research into effective treatments for Wolfram syndrome and its various symptoms.

2

Connect people affected by Wolfram syndrome with the information and resources they need to live a life of meaning and impact.

3

Mobilize the Wolfram syndrome community to generate resources to maximize progress and impact.