Sophisticated Living St. Louis

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The Snow Foundation

Sophisticated Details: The Snow Foundation’s primary purpose is 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 decade 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 new vision is bold: a world free of Wolfram syndrome and other rare diseases. 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:

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

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

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

Sophisticated Goals: The Snow Foundation provides seed grants to scientists for translational or clinical studies related to development of potential new diagnostics or treatments for Wolfram syndrome. The grant program funded the drug repurposing clinical trial of Dantrolene sodium at Washington University School of Medicine in St. Louis. The trial focused on the safety, tolerability, and efficacy of the drug (visual acuity, neurological functions and remaining beta cell functions). The Snow Foundation also joined forces with the Association syndrome de Wolfram (France) and the Eye Hope Foundation in (Belgium) to acquire funding for a large-scale project aimed at accelerating the development of new treatments against Wolfram syndrome. The project is coordinated by Professor Timothy Barrett, University of Birmingham, United Kingdom.

Sophisticated Giving: The vital work of The Snow Foundation is made possible solely by many generous individuals, corporate partners and foundations who believe strongly in supporting breakthroughs in scientific research that not only impact Wolfram syndrome patients, but millions of people suffering from diabetes and other neurological diseases as well. To watch a child suffer with diabetes, and eventually lose their vision and hearing is unimaginable, but to know that they are deteriorating because of a lack of funding for critical research and support services is truly heartbreaking. Please help give Wolfram syndrome patients and their families hope by supporting The Snow Foundation’s mission today. For more information, please visit www.thesnowfoundation.org.

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