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.
On Tuesday, July 7th at AT&T park, the San Francisco Giants celebrated “Snow Foundation Night” to raise awareness of its mission to find a cure for rare disease, Wolfram syndrome. Prior to the 7:15 p.m. match up between the reigning World Series Champs and the New York Mets, former Giants first baseman and six time Gold Glove winner, J.T. Snow addressed the crowd on the important mission of the Snow Foundation.
July 8, 2015 – 2nd Annual Snowman Classic
Cocktail Competition
6:00 p.m. – 11:00 p.m.
Omni Hotels and Resorts
San Francisco California
Join Alex’s Army for a fundraiser with bowling, raffles and an auction on April 26th from from noon to 4pm at the Concord Bowl. Proceeds benefit The Snow Foundation for Wolfram syndrome research. $20 per person includes hot dog or hamburger, chips with a drink and the option to bowl. (Additional concessions will be available for purchase.)
To register please contact Amber Bieser at amberbzr@gmail.com
The Inaugural Snow Foundation “Shoot For A Cure” Sporting Clay Competition will be held at the exclusive Strathalbyn Farm Club on Saturday, October 31, 2015. The event will include range practice and a 15-station sporting clay competition followed by lunch, a live auction and awards ceremony. All proceeds from the event will benefit The Snow Foundation, a nonprofit dedicated to raising awareness and funding for a rare and deadly form of Diabetes called Wolfram syndrome.
Admission to the Clubhouse during the Shoot Out. Lunch, cocktail reception and fire pit area included.
Can’t attend the event but want to support the foundation? Make a donation by clicking HERE.
You must be logged in to post a comment.