At 5 years of age, Gwendolyn Strong has defied the predictions. Diagnosed six months after birth with Spinal Muscular Atrophy (SMA), doctors assumed she would not live much past her second birthday. Though mentally she was unaffected, Gwendolyn would need assistance breathing and eating as the progressive disease robber her of all physical abilities. The news was devastating to her parents, Santa Barbara residents Bill and Victoria Strong. “But we realized there were things we could do,” says Bill.
They gathered information and started an online petition in support of legislation that garnered 100,000 signatures. But things really took off — and led to the establishment of the Gwendolyn Strong Foundation — when the family planned a cross-country trip to introduce then-18-month-old-Gwendolyn to her 104-year-old great-grandfather in Mississippi. They sold sponsorships and raised $44,000 to fund awareness and medical research.
“The foundation has served as a way of channeling potentially negative energy in a positive way,” Bill says. “We focus on teaching, inspiring, getting people to care.” That spirit is epitomized by the slogan on the foundation’s fundraising apparel: NEVER GIVE UP. And it’s reflected in the organizations emphasis on athletic events. “People pushing themselves physically to help people who are physically challenged — that’s our platform,” he says.
The foundation relies heavily on social media and technology to spread its message and also improve the quality of life for children with SMA. “A $500 iPad — which the foundation gives away through its Project Mariposa — can change the world for these kids,” Bill says, adding that, “several promising programs going into clinical trials could end the disease. That’s within reach.”
