About The Snow Foundation
Stephanie Snow Gebel is the co-founder of The Snow 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 The Snow Foundation
My Wolfram Syndrome Journey – Pat Gibilisco – Pt. 1
Part I: The Beginning My journey started 28 years ago. My daughter was two years old when she was diagnosed with Type 1 Diabetes. We were able to manage it and still live a great life. When she was 12, she started to have other health issues, specifically, problems with vision and extreme thirst. Our […]
Jack Snow – His Cause Continues
Strong of Heart, Profiles of Notre Dame Athletes (written by Randy Covitz) Jack Snow’s daughter Stephanie pleaded and finally persuaded him to be in the birthing room when she was about to deliver her daughter Raquel. Tears filled Snow’s eyes when he held Raquel, his seventh grandchild, with the steady hands that caught 60 passes as […]
Reflections
With 2016 behind us and the promise of 2017 ahead, I sit in my front room looking at the beautiful fire, wondering where the time has gone. My childhood was wonderful. I had two parents who loved me to the moon and back. My dad was one of a kind — handsome, charismatic and so […]
Struggles With A Rare Disease
A lot has happened over the last month and lately, I have been extremely exhausted and find myself wanting to crawl in bed, get under the covers and stay there for as long as possible. I am a warrior for this disease and for all those suffering from it. Hell, my tiny little foundation has […]
Researchers launch first clinical trial for Wolfram syndrome
Researchers at Washington University School of Medicine in St. Louis are launching a new clinical trial to assess the safety of a drug treatment for patients with the rare disease Wolfram syndrome. Wolfram syndrome affects about one in every 500,000 people worldwide. Many of those patients die prematurely from the disease. Patients with Wolfram […]
The Snow Foundation: Fighting for a Cure
Wolfram syndrome afflicts only about one in 500,000 people, but a local organization is doing everything it can to bring the numbers down and find a way to cure this incurable disease. As described on The Snow Foundation’s website, Wolfram syndrome is an autosomal recessive genetic disorder that starts with insulin-dependent diabetes in early childhood. […]
Raquel and Braces
Today Raquel is getting braces. It wasn’t the fear of her coming out with braces that heightened my anxiety, but it was the process. She was going to Demko Orthodontics, and they are wonderful. However, I was acutely aware of the fact that they probably have never had a patient like Raquel with some of […]
Finding A Cure for Victor
It’s been almost a year now since my 7 year-old son Victor was diagnosed with Wolfram Syndrome. I still remember the day we found out, we got the diagnosis and then were basically sent home. Our doctor said all he could do is to try to treat the symptoms but not the cause because there […]
How Do I Calm My Frantic Heart?
Judgment Day No longer were the days of scheduled naps, gold stars, and lollipop rewards. For Raquel, no longer were the days of naive young children with innocent ignorance, but now the transition to very aware adolescents with a far too critical eye. I should have been excited at the idea of Raquel progressing in […]
About the Snow Foundation
The Snow Foundation is a collective voice for Wolfram syndrome patients, working towards a cure for Wolfram syndrome and developing novel therapies for diabetes, vision loss, hearing loss and neurodegeneration.
Rare Diseases…Common Problems
P.O. Box 50224 Clayton, MO 63105
(402) 694-1354
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