COMMUNITY & CULTURE
TAKE IT FROM ME … with Stephanie Snow Gebel
CONFIDENT COMPETITOR . SPIRITUAL . GO-GETTER .
By Diane Kline
Stephanie Snow Gebel will be the first to tell you , “ I grew up in a locker room ” - and mean it . Her brother , J . T . Snow , was first baseman for the San Francisco Giants . Her father , Jack Snow , was a wide receiver and announcer for the football Rams . She , too , started working for the Rams , eventually as an administrator in charge of player contracts . In 1995 , when the Rams moved to St . Louis , she and her parents followed .
Thanks to the move , Gebel met her husband , Barclay , the team ’ s practice facility manager , whom she recalls looked “ totally sexy in a tool belt .” But as the couple ’ s wedding plans were underway , Gebel ’ s mother was diagnosed with cancer and died seven months before the nuptials , leaving her devastated .
Years later , while raising four young children , Gebel faced another heartbreaking blow . Her 4-year-old daughter , Raquel , was diagnosed with Wolfram syndrome , a rare neurological disorder affecting 30,000 people globally . The disease leads to blindness and deafness , and those suffering from it have a life expectancy of about 30 years .
When Raquel was diagnosed , little was being done as far as research or finding a cure for Wolfram , so Gebel - a fierce competitor like her athletic family - became its most tenacious warrior . In 2010 , with no background in nonprofit management or fundraising , Gebel founded The Snow Foundation to educate , raise awareness and work to find a cure for Wolfram syndrome .
Today , Gebel confers with doctors , attends global medical conferences and raises money , as well as oversee the foundation - all while yearning for what really matters .
“ I still want my life as a homemaker , taking care of my husband and kids , and cleaning the toilets ,” she said .
Here , Gebel shares what she has learned from being a fearless fighter .
I had to grow up when my mother died right before my wedding . I was always the spoiled baby in the family , but that changed suddenly . I was planning my wedding while watching my mother deteriorate from cancer . I saw my dad shave my mom ’ s hair , and then break down sobbing . What do you do , watching this big , 6-foot , 2-inch man cry , when I was the one who always cried on his shoulders ? It forced me to grow up and get strong .
God , what are you trying to show me ? I loved being a mom , but I was antsy . I prayed to God , “ Give me something I can do that will have an impact on the world , but don ’ t let it be at the expense of my children .” Then Raquel was diagnosed , and I asked God , “ How much can one woman take ?” I knew the answer was stop feeling sorry for myself and do something .
I can raise that money . Washington University was doing a clinical study on Wolfram syndrome , but they needed $ 150,000 for the second year of the study . Although I ’ d never done fundraising , I heard myself say , “ I can do it .” There were people at the Rams I called on , and others who stepped up . We met our goal , and that led to the foundation .
A few years ago , I was mad , mad , mad at the world . I was too outspoken and had to be muzzled ! Hey , I grew up in a locker room ! In meetings , I responded too strongly and didn ’ t take into account that I was talking to very intellectual , very successful doctors with strong egos . Eventually , I was coached about how to be more polished and tactful .
Our marriage had to break down so we could redefine it . Between Raquel ’ s illness and my work running the foundation , our marriage took a hit . It forced us to go into therapy . I ’ d wanted to be in charge and make all the decisions , but I had to rely on my husband more . We learned how to balance things , which is hard when you have a child in and out of the hospital . I figured out the grass isn ’ t greener , so find a way to be happy where you are .
My dad taught me to stick up for the underdog . He was compassionate and always tried to do good . I didn ’ t know how to run a foundation , but I believed I could figure it out . When I started , there was no hope for these patients ; today , we ’ re doing drug trials . I won ’ t quit until we find a cure . I guess I ’ m just my father ’ s “ mini-me .”
Photo by Justin Barr Photography
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