Paralyzed 5-Year-Old with Terminal Disease to Run in Marathon with Help of Parents and 100 Others
Santa Barbara, CA -- November 5, 2012 -- One hundred runners from around the country will gather in Santa Barbara, California on November 10, 2012 to run in the Santa Barbara International Marathon (SBIM) for the Gwendolyn Strong Foundation (GSF), a Santa Barbara-based nonprofit dedicated to increasing awareness of Spinal Muscular Atrophy (SMA), the # 1 genetic killer of young children. Among the runners is 5-year-old Santa Barbara native Gwendolyn Strong, who has SMA.
As a result of SMA, Gwendolyn has never crawled, walked, or taken a single step and she has never spoken a single word. SMA does not impact the mind and despite her many physical challenges Gwendolyn has always been a determined little girl. After cheering for her Dad in the SBIM last year, Gwendolyn made it clear that she wanted to “run” her first half marathon in the SBIM. GSF co-founders and parents to Gwendolyn, Victoria and Bill Strong, will make that dream come true by pushing Gwendolyn all 13.1 miles in a customized running wheelchair built to accommodate her life-critical machines.
In addition to the Strongs, “Team GSF” members hail from California to Boston and include other SMA parents, families, and friends, and individuals and businesses moved by the GSF’s efforts and the SMA cause. The one hundred Team GSF runners have raised over $110,000 for the GSF. Beyond funding, Team GSF has also raised much needed awareness of SMA. Last year, Team GSF had 30 runners in the SBIM and raised over $45,000.
“We have been blown away by the generous support of the Team GSF runners and sponsors,” said Victoria Strong, GSF co-founder. “There is something profound about people challenging themselves physically to help those who are physically challenged. This is a momentous event for Gwendolyn, our family, and our nonprofit and although each of the one hundred Team GSF runners has their own story and motivation there is an undeniable common fiber that weaves us all together. A desire to make a difference in this disease called SMA. That’s incredible. That’s wonderful. And we’re humbled.”
SMA is a terminal, degenerative genetic disease that impacts all voluntary muscles typically in children, including the ability to walk, sit, stand, eat, breathe, and even swallow, while cognitive ability is never affected. 90% of children born with the most severe form of SMA die before the age of two. 1 in every 40 people, or nearly 175 Million globally, unknowingly carries the gene responsible for SMA. There is currently no treatment or cure, but research is mature. The GSF creates unique programs focused on raising awareness of SMA, funds research to help end it, and provides those impacted by SMA and other diseases with technology to help make their lives easier.
Sponsors of Team GSF include: The Paskin Group, Mission Wealth Management, Dioji, 2G Foundation, Infinity Wind Power, The Blum Family, Impact Radius, Rudy Schulte Foundation, OnQ Financial, Idealab Charitable Foundation, The Crader Family, Schlinger Family Foundation, Littler Mendelson, Platinum Performance, Merrill Lynch, Estalea, RingRevenue, Complete Solar Solution, Counsyl, Audience Science, Span Construction, Demetria Estate, We-Care.com, Rusty’s Pizza Parlor, Kacie Jean Photography, SB Training, and Thomashilfen.