About The Snow Foundation (TSF)
The Snow Foundation is a voice for rare disease, working towards a cure for Wolfram Syndrome (WS) and developing novel therapies for diabetes, vision loss, hearing loss and neurodegeneration. TSF provides valuable insight and resources to the patients and their families, empowering them with knowledge necessary to participate in their care and their futures. The Foundation has been working closely with, and supporting, the research of Dr. Fumihiko Urano in St. Louis Missouri as well as Dr. Timothy Barrett in Birmingham England.
What is Wolfram Syndrome
Wolfram Syndrome is a genetic disorder that strikes otherwise healthy children and leads to the death of brain and pancreatic cells, causing severe diabetes, progressive vision loss and hearing loss, bladder loss, as well as problems with balance, coordination, and even breathing. Sadly, more than 60% of Wolfram patients die before age 30.
Significance of a Wolfram Syndrome Cure
Wolfram Syndrome is a rare and deadly form of diabetes, which leads to vision loss, hearing loss, and neurodegeneration. Therefore, a cure for WS may lead to new therapies and potentially a cure for diabetes in general which affects an estimated 70 million people worldwide. A drug discovery for WS could also lead to new therapies and potential cures for other neurological diseases such as Alzheimer’s and Parkinson’s.
Status of Research
TSF is on the cusp of a cure that can save these patients, but financial support continues to be the rate-limiting factor in developing therapies for these patients. The world of big pharmaceuticals and medical research is incredibly competitive and very money driven; any number of groups could fund this research and potentially find a life changing treatment not just for WS, but also for people suffering from diabetes and neurodegeneration. Rare Disease is grossly underfunded! The Snow Foundation needs to raise $1.2 million in order to test the efficacy of a new drug candidate as well as regenerative therapies for vision impairment and brain dysfunction.
In keeping with Paul Newman's desire to make the world a better place, please help us raise the necessary funds to support rare disease research and the children who are suffering from rare diseases.