Former San Francisco Giants first baseman J.T. Snow teed off Monday morning in the JSY First Annual Golf Classic at the Blackhawk Country Club in Danville with many fellow professional athletes, television personalities, Hollywood celebrities and local business people to raise money for a rare but deadly genetic disease known as Wolfram Syndrome.
Snow’s 5-year-old niece, Raquel Gebel, was diagnosed with Wolfram Syndrome, which ultimately leads to vision and hearing loss and brain damage. The onset of the condition usually begins at 4 to 5 years of age and takes 5 to 8 years before the hearing, vision and brain degeneration begins.
Most patients diagnosed with Wolfram’s do not survive past their 30th birthday.
“My niece was diagnosed with juvenile diabetes a few years ago and last year she was diagnosed with Wolfram Syndrome,” said Snow. “My sister (Stephanie Snow Gebel) started the Snowman foundation in my father Jack’s name. The goal of the foundation is to raise money for the Washington University in St. Louis’ Wolfram Program, which runs clinics that bring kids from all around the world that have Wolframs and they study them.”
The scientific group led by principal investigator, Dr. Alan Permutt at Washington University in St. Louis, puts the children through a three-day battery of tests including MRI’s and brain scans, to go along with vision and hearing examinations. According to Snow, the clinics have a significant cost at $10,000 per patient, but the research has been valuable.
With the Snowman foundations assistance and donations, the clinics have been able to accommodate 30 patients per year. Snow also said the research has led Dr. Permutt to progress on a drug, awaiting FDA approval, that early results show could keep the syndrome in remission and allow the afflicted patients to live a longer life.
The drug still needs more extensive testing but could prove to be the breakthrough for the Snow family and all those suffering with Wolfram Syndrome.
“Out of 150,000 kids with type-1 diabetes, (Wolfram) will affect one kid, it is very rare. It just happens that my niece has it,” said Snow. “We are just trying to get these doctors the resources to get the cure out.”
The celebrity golf tournament’s minimum donation cost $2,000 per team of four players and was attended by the likes of Hall of Fame baseball player Joe Morgan, actress from the George Lopez Show Aimee Garcia, Golden State Warrior Jeremy Tyler, former NFL wide receiver Drew Bennett, former Major League baseball player Gregg Jefferies, along with many others.
You can get more information by checking out the Snowman Foundation website.
Snow would like readers to consider submitting a donation to the Washington University for Wolfram Syndrome research. You can donate online or by check:
Make a gift online
1. On the page titled, "Make and Online Gift", the second (2nd) section is, "Direct my gift to the following (please select one):
2. Check the box next to "Other"
3. Type in the space next to "Other", The Jack and J.T. Snow Fund
4. Complete the form with personal information and donation details
Checks may be made out to Washington University School of Medicine, with Jack and J.T. Snow Fund in the memo portion, and sent to: Washington University School of Medicine
Attn: Shannon Reynolds Torbett
7425 Forsyth Blvd., Suite 2100
St. Louis, MO 63105