Hey gang! Like golf? Like helping a member of the Notre Dame family? Anywhere within driving distance of St. Louis on October 17th? Yeah!? Good! Keep reading!
I am currently working on a project with Jack Snow’s (ND’65) daughter Stephanie. She has reached out to me to help her with a golf tournament benefiting the Jack & JT Snow Fund to help find a cure for Wolfram’s Syndrom, which her daughter is currently fighting, on Monday, October 17 in St. Louis. Here is some background info from Stephanie Snow (below). If any of you are in the local St. Louis area and are interested in golfing, or could send us some spare change, we would be most appreciative.
And here’s a message from Jack’s daughter, Stephanie.
My father, was Jack Snow, an All American, who graduated from the University of Notre Dame. He passed away just months after his granddaughter, Raquel Gebel, who is now 6 years old, was born. Raquel was recently diagnosed with a rare genetic disorder called Wolfram syndrome. Wolfram syndrome typically begins with the diagnosis of juvenile diabetes and further leads to hearing, vision and brain loss. Tragically, 60% of patients with this disease do not make it past their 30th birthday. Born a Snow, I know that my path is to act proactively in order to stop the tragic progression of Wolfram syndrome.
Since Raquel’s diagnosis, I have started the Jack & J.T. Snow Fund @ Washington University School of Medicine www.snowmanfund.com. My father is a part of Notre Dame’s football history, and he also called St. Louis his home the last 11 years of his life as the “Voice” of the Rams. My brother, J.T. Snow, former 1st baseman with the San Francisco Giants and myself have worked very hard to raise public awareness and money in order to stop this disease. Everything my father did, he did with decency and conviction and I have no doubt that the way he lived his life continues to make a difference each and every day, contributing to the ultimate success of helping Raquel and other children faced with Wolframs.
Currently, Wash U is the only research institution conducting in-depth studies on treatment options and possibly a cure for this rare disorder. Dr. Alan Permutt, the lead doctor, actually discovered the gene responsible for Wolfram syndrome about 11 years ago and he has made great advancements towards helping those affected by the disease. Unfortunately, it all comes down to finances and last year Dr. Permuttâ€™s lab was denied a large grant which would have ensured long-term funding for the much needed clinics. If the Jack & J.T. Snow Fund does not raise the proper funds, the doctors can not get a drug approved by the FDA which could potentially save my daughter’s life and many others affected by this insidious disease. So you see, the more we learn about the disease, the better equipped we are to fight it!
Sounds like a great cause and a great event to me, so if you’ve got the means and the opportunitiy, or would like to learn of other ways to help out, head on over to the fund’s site to learn more!