Last Saturday was my 7-year old son Jack’s first football game. The whole family went, including my brother J.T.’s 16-yr old son Shane who was visiting from San Francisco. We were all excited to go and watch these miniature NFL athletes. Raquel said to me, “mom why do I have to go, I can’t even […]
About Stephanie Snow Gebel
Stephanie Snow Gebel is the co-founder of the Jack and J.T. Snow Scientific Research Foundation and mother of Raquel Gebel who suffers from Wolfram syndrome. She is also the daughter of the late Jack Snow, former “Voice of the St. Louis Rams,” 11-year veteran of The Los Angeles Rams, and Notre Dame All-American. She is the sister of J.T. Snow, former San Francisco Giants first baseman and six-time Gold Glove winner.
Entries by Stephanie Snow Gebel
I have read many articles related to Wolfram syndrome. The most-read article is entitled “Neurodegeneration and diabetes: UK nationwide study of Wolfram (DIDMOAD) syndrome” describing the natural history of Wolfram syndrome. This article was written by Timothy Barrett, MB, BS (MD), PhD in 1995.http://www.ncbi.nlm.nih.gov/pubmed/7490992 I read this paper over and over when I started working on Wolfram syndrome […]
I love holidays. All of them. I even love those special days we’ve created, “Sweetest Day”, “Grandparents Day”, “Take Your Child To Work Day”. But who knew I’d be so involved in something called “World Rare Disease Day” on February 28th. Not exactly something that was on my radar a couple years ago. But, here […]
It was a little over 2 years ago when I embarked on this journey with Wolfram syndrome. Last October, I received a devastating blow, one that would change my life and others forever. My youngest daughter, Raquel, was diagnosed with Wolfram Syndrome, a terminal form of diabetes. She had been diagnosed with Type 1 diabetes […]