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OurStory

Our Story

Read about the Snow Family and their fight to save the life of young Raquel Gebel, granddaughter of Jack Snow and niece of J.T. Snow. Raquel was diagnosed with Wolfram syndrome in late 2010. Read More
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Regis Philbin Joins the Snow Foundation Team

Regis Philbin, a Notre Dame alum and fan of Jack Snow, volunteered his time and talent to narrate a short film on The Snow Foundation. Please watch and share this 11-minute film. Read More
Events

Snow Foundation Events

We have a number of special events and fundraisers that are just around the corner. Take a look at our calendar, we’d love to see you at our next outing! Read More
Research

The Evolution of Wolfram Syndrome Research

From the early days of Wolfram syndrome research in 1994 by Dr. Alan Permutt to today, the scientists studying this rare disease are getting closer to clinical trials everyday. Read More
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We have joined the Global Rare Disease Registry Program of NIH/NCATS

I have some good news to share with you. We have just joined the Global Rare Disease Registry Program of the National Institutes of Health (NIH)/National Center for Advancing Translational Sciences (NCATS). Dr. Austin, Director of NCATS, and Dr. McInnes, Director of the Office of Rare Disease Research, helped me to make this happen. Dr. […]

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Drug development for Wolfram syndrome with NIH, NCATS

My visit to NIH, NCATS, with Stephanie Snow Gebel, Chairman of the Board of the Snow Foundation, was quite successful. We have had multiple discussions in the past two weeks and agreed to develop novel chemical compounds (i.e., drugs) for Wolfram syndrome. We will target the endoplasmic reticulum. This will be a three-way collaboration with […]