You may remember Jack Snow for his leading role on the 1964 Notre Dame squad which ushered in “The Era of Ara,” the 11-year coaching tenure of the legendary ND head coach Ara Parseghian. That year, Jack Snow, combined with quarterback and fellow California native John Huarte, formed the record-setting passing combination for the 1964 Fighting Irish team which won its first nine games, rose to No. 1 in the national polls and were just within reach of completing a national-championship season before losing 20-17 at USC.
Or you may remember Jack Snow for his career as a wide receiver for the Los Angeles Rams. Snow ranks fifth in Rams history for career receiving yards (6,012) and touchdown catches (45), plus he is seventh in receptions (340). He played in 150 games during an NFL career that included a Pro Bowl season in 1967 (28 rec. for 735 yds, 8 TDs) while his best overall season came in 1970, when he finished fifth in the NFL with 51 receptions and ninth in receiving yardage (859, plus 7 TDs).
I, however, remember Jack Snow as a dear friend and Notre Dame classmate of my father’s, and cherish the connection and friendship that I have formed with his daughter, Stephanie Snow-Gebel. My dear friend Stephanie has asked me to spread the word regarding her fight to save her daughter, Raquel, and find a cure for Wolfram syndrome.
A mom’s journey to find a cure for an incurable rare disease.
Stepping in when drug companies do not.
Looking at 10-year-old Raquel Gebel you would never suspect that her body is breaking down and taking with it her sight, hearing, and many neurological functions. It is a parent’s worst nightmare, a seemingly normal child until 3 years back, is rapidly deteriorating. She is losing her vision, her hearing and many bodily functions such as bladder control. Without a cure wolfram patients will die young.
Unfortunately, drug companies are not interested in finding a cure for such a rare disease. Raquel’s mom, Stephanie Snow Gebel, decided that she is not going to just sit back and watch her child die. She formed The Snow Foundation to bring together the small Wolfram syndrome community and help find a cure.
Raquel taking a break during photo session. Not a bad place to hangout, The Cardinals Dugout! — at Busch Stadium. June 2015
With their support, Dr. Fumihiko Urano and his research team in St. Louis, MO have been able to conduct groundbreaking research. A promising therapy that could halt progression of Wolfram syndrome has finally been found. Raquel and other Wolfram patients are ready to enroll in the human drug trial but there is no money to fund it.
Please, take a moment to watch the below message from Stephanie, spread the word, and help if you can https://snowfunds.org.
Thank you for your time! We are thankful and blessed for the support of the Notre Dame family in this fight to cure Wolfram Syndrome and save Raquel and all of the other patients fighting against this rare disease.
Her Loyal ... Daughter
Lisa Kelly is a multidimensional marketing professional. She has over two decades of marketing experience and earned a bachelor of business administration and marketing from the University of Notre Dame (Class of 1993 ... Siegfried Hall!). She is a Digital Publishing Manager by day and by night is writing her third book, a continuation of "Echoes From the End Zone: The Men We Became" and its sequel "The Men We Became: MORE Echoes From the End Zone." In 2012, Lisa was crowned the "Biggest Fan of the Big East" in a blogging and social media contest, representing Notre Dame.
Read all posts by Lisa
- Breaking Discoveries in CTE Research? - March 12, 2018
- A Football Player’s Lucky Charm? - February 22, 2018
- Part II: From Football to Coffee Beans? - January 31, 2018
