Join Team GSF and help change the future of spinal muscular atrophy (SMA)!
I've always wanted to run a marathon -- it's one of those goals I planned to "one day" check off my list. But until last year, the last time I ran in any way was home from my office the day my daughter, Gwendolyn, was diagnosed with spinal muscular atrophy (SMA). That was over four years ago. She was just six-months-old.
I was at work. My cell phone rang. It was my wife, Victoria. All she said was -- "Come home." She didn't need to say anything else. We had been waiting for the results of Gwendolyn's SMA blood test for two weeks. We'd been waiting to learn if Gwendolyn's condition was terminal. I knew immediately when I picked up the phone and I went completely numb. The world instantly felt tiny and the walls in my head closed in. The sounds around me muted. I vividly remember shutting my laptop, shoving it in my shoulder bag, getting up from my desk, and leaving without saying a word. Then I ran. It was about a mile and I literally ran as fast as I could. Frantically. I was so disoriented that I took a route that I would never normally take and I have never taken since. It was like an out of body experience and my mind was on auto-pilot. I just needed to get to Victoria and Gwendolyn. We needed to be together. As a family.
That day was a little over four years ago. I think it is safe to say we've come a long way since then. No doubt, Gwendolyn has been through and fought through more than any child should have to face. Victoria and I have been through a lot. Our family and friends have been through a lot. An SMA diagnosis is crushing. It has touched every aspect of our life and SMA doesn't sleep. The progressive nature of the disease has since stolen my precious daughter’s ability to move, to speak, to swallow, to cough, to breathe unassisted, and now to even smile. But Gwendolyn has shown me that while SMA has taken many physical things from her, while she's with us, it will never get its hands on the things that truly define her: her incredible mind and curious nature, her love for family and friends, her tenacity and will to fight, her desire for adventure, her infectious zest for life, and her beautiful spirit.
Last year I ran my first marathon -- the Santa Barbara International Marathon (SBIM) -- joining a long list of incredible people who run for "Team GSF" to support the Gwendolyn Strong Foundation (theGSF) and our mission to change the future of this brutal disease. We are continually inspired by those who push their physical strength to the limits to help conquer a disease that robs children of theirs. Team GSF is skilled athletes, Iron Men, triathletes, Boston Qualifiers, ultra marathoners, first time runners, walkers, relay teams, half marathoners, full marathoners... And Team GSF athletes have raised over $200,000, pushing theGSF support programs and SMA research forward in the process. Their actions have literally inspired hundreds of people to run alongside them to help fight SMA -- including Gwendolyn.
Since running the SBIM last year, Victoria and I have started “running” with Gwendolyn regularly. We push her in a specialized wheelchair and she loves it. She proudly wears her theGSF NEVER GIVE UP. jersey and demands her fast running pants. She tells us running makes her feel "FREE!" In her short life, Gwendolyn has never run or walked or crawled. She never will. But she loves to go fast. She loves adventure. And she is always pushing herself. Four years ago I ran frantically home to embrace my wife and daughter after that crushing SMA diagnosis. This time I'll be running with them to help end this brutal disease. One foot in front of the other. One stride at a time. The same way we face SMA every day. And we will be joined by dozens of others with the shared mantra to NEVER GIVE UP. We hope you’ll run with us too!