Wolfram Syndrome

Blog: Combating Wolfram Syndrome

The Blog of Dr Fumihiko Urano, Principal Researcher

University of Washington, Saint Louis, MO

The Wolfram Syndrome International Registry

The Snow Foundation

"The Jack and J.T. Snow Scientific Research Foundation began as The Snowman Fund to raise money for Wolfram syndrome research at Washington University’s School of Medicine (WUSM) in late 2010. The Fund has now evolved into the Foundation, sharing the same mission, to raise awareness of and funding for research that one day will stop the progression of Wolfram syndrome..."

Race For A Cure: STL Research Could Save Lives Around The World

"A St Louis mother is working to get the word out about a rare disease. A potential cure is being researched here and could save lives around the world. Allman Reporter Aisha Khan has more."

From ABC 30 in Saint Louis, MO

Video Clip From "The Doctors"

Wolfram Syndrome

Wolfram Syndrome is so rare, it occurs only in approximately 1 in 700,000 people. When Ellie was diagnosed, she was the only one in Colorado with the Wolfram Syndrome. Wolfram Syndrome is a rare genetic disorder linked to diabetes. Symptoms include vision and hearing loss and life-threatening respiratory problems. The average life expectancy is 30 years. Wolfram Syndrome is inherited as an autosomal recessive condition. Both parents carry one abnormal copy of the Wolfram gene, and one normal copy. For a child to be affected, he has to inherit two abnormal copies, one from each parent.

There is no known treatment for Wolfram Syndrome beyond managing the resulting complications. Life expectancy of the average person suffering from this syndrome is about thirty years.