Entries by The Snow Foundation

Wolfram Mom in Florida

I am a Florida mom with a child with Wolfram Syndrome. Actually, he’s no longer a child but he will always be my baby. My son is now 24, and has been affected by this disease since he was six years old. At that time, we lived in New York City with some of the […]

2016 “Eat Drink Give” The Snow Foundation Annual Fundraiser

The Snow Foundation’s event Eat Drink Give, on May 14th, 2016, was a special evening which raised awareness and funds for Wolfram Syndrome Research. The festivities began at 6:30pm on the beautiful grounds of Grant’s Farm in the historic Bauernhoff and Carriage house. Attendees enjoyed a wonderful barbecue, cocktails, beer tasting, and great music by Dance […]

A Mom on a Mission!

A quick description of my job; work 24/7, deal with scientists, researchers, doctors, philanthropists, sports figures, political figures, full time advocate for rare disease, counselor for parents and patients, breakfast, lunch, dinner meetings, travel around the world, public speaker, accountant, secretary, marketing and most important Fundraiser. ​​Combine all the above and they do not equal […]

Wolfram Syndrome Support and Information Day in the UK

The Snow Foundation was represented at the  3rd Annual Wolfram Syndrome Support and Information Day in the UK in November.   The conference had numerous speakers ranging from specialized service, therapeutics, developing treatments, urology, psychology and neurology, to name a few.  Dr. Fumihiko Urano gave a presentation on patient based therapeutics and Stephanie Snow Gebel spoke about […]