Caitlin Fess is a beautiful young lady who has Wolfram syndrome and isn’t afraid to talk about her disease and spread awareness.
The Snow Foundation wants to thank Caitlin’s mother Dena, her father Brad, and the rest of the Fess Family for putting together the Elimination Dinner Event. They raised over $6,000 at the event for the Snow Foundation. We are extremely grateful to the families and their friends who are helping make a difference. We are nothing without all of you.
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 Floor Riot. KMOV Channel 4 Steve Savard was the emcee for the evening and interviewed Raquel Gebel (11) and Lauren Gibilisco (29) who both suffer from Wolfram Syndrome. The event was a success, raising close to $90,000, which will be used to find a life changing treatment for those who suffer from Wolfram Syndrome.
On Sunday, March 20, 2016, Team Alejandro participated in The Oakland Running Festival in their 6th Annual Run to Beat Wolfram Syndrome! Team Alejandro ran in support of 12 year-old Alejandro Jimenez (a Wolfram Syndrome Patient) as well as all children and young adults affected by Wolfram Syndrome. They successfully raised $12,374.00 which will help The Snow Foundation increase awareness of Wolfram Syndrome and find a cure.
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 The Snow Foundation to over 100 Wolfram patients and their families. It was an honor to represent the United States and our fight against Wolfram syndrome and diabetes. It was also refreshing to know that there are individuals who are fighting just as hard to better the lives of those who are living with this insidious disease. The Snow Foundation is looking into starting a similar workshop here in the States, although we are much larger than the UK, it will take a great deal of funding to implement such a program.