The Snow Man

Snow was a stoutly built player with wide shoulders, and as one of the few weight-lifters at Notre Dame, he held most of the school records. His neck was bull-like. Based on his physique alone, it was hard to envision Snow as a wide receiver. On team picture day, he was more easily grouped with the likes of linebackers Jim Carroll and Ken Maglicic.

Gut instinct told Parseghian that Snow would excel at the wideout position. He certainly possessed an air of confidence that belied his second-string status. Snow never thought twice about swaggering into Parseghian's office without an appointment and smiling confidently as he shook hands with his new boss. Meanwhile, walking behind him, was slump-shouldered third-string quarterback John Huarte. While Snow radiated self-assuredness, Huarte exuded an air of defeat.

"Coach," Snow began. "You might not know it, but I am the best. Don't look at the films because you'll only find 5 or 6 catches by yours truly, but I can assure you that I am the best receiver on this team. On top of that, this man right here beside me is John Huarte. He is the best damn quarterback on this team."

Huarte looked down and shrugged his shoulders.

As they left the office, Huarte turned to Snow and quietly asked, "Jack, do you think we should have done that?"

Snow laughed. "I don't know, Johnny, but at least he knows who the hell we are." [excerpt from Jim Dent's book, Resurrection]

For years my Dad has been telling me stories about Jack Snow. Stories of their days spent at Notre Dame. Stories of the encounters that they had in the years that followed. And though I never got the chance to meet him in person, I feel as though I've gotten a pretty amazing glimpse into the quiet yet commanding person that was Jack Snow.

A few months ago I got an email from none other than Stephanie Snow, the daughter of Jack Snow. She reached out to me as a member of the Notre Dame community to help her with a cause that is near and dear to her heart ... and now mine. Stephanie explains it much better than I do, so here's her story!

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, Washington University 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. Permutt’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!

On October 17, Axius Financial, J.T. Snow and Steve Savard will be hosting The Snowman Scramble. I have attached the above flyer with information regarding this tournament. Please be reminded that I am a mother of a very sick child who needs all the support she can get, we have about a 3-4 year window before her eyesight, hearing and brain development start to fail. As each day passes, so does the chance of Raquel leading a normal and productive life!

I was so moved by Stephanie's message that I have joined her team to promote the upcoming golf tournament and to help raise funds to help find a cure for Wofram's Syndrom. And now I am reaching out to you ... can you help? If you are in any way interested in golfing, volunteering, or sending some spare change our way, we would be most grateful for your support and help! And if you have any questions or need any more information, please leave me a comment and I will get back with you as soon as I can!

Thank you again, from the bottom of my heart!

Cheers!