Medical research is coming close to unraveling the mysteries of many common diseases, and one Santa Barbara family wants to see progress move faster than ever.
Bill and Victoria Strong are behind an effort to raise funding for more research on Spinal Muscular Atrophy. They’re asking the public to cast their votes by Friday in the Chase Community Giving Contest. If chosen, their effort could bring in $1 million for SMA research.
The Strongs’ daughter, Gwendolyn, was diagnosed at age 6 months with SMA, which keeps her brain from producing enough protein to operate her body’s muscles.
Researchers estimate that one in 40 adults carries the gene. The disease is terminal, and 90 percent of babies born with Type 1 SMA die before their second birthdays. There is currently no treatment or cure for the disease.
The family began the Gwendolyn Strong Foundation with a focu on raising awareness of SMA and the search for a cure.
The foundation was chosen in round one of the contest, during which voters chose the top 100 charities. Each charity was given $25,000, and the Gwendolyn Strong Foundation sent its award to an SMA research program at UC Irvine that will be conducting clinical trials with patients this year.
“This funding is already in the hands of researchers and being used in the lab,” according to the foundation’s Facebook page.
All 100 programs were given the opportunity to move into the final round to compete for the $1 million award. Foundation representatives said they’ll select the most promising SMA research projects and decide how the $1 million should be distributed, if they’re chosen.
That’s where the Strongs hope the public — and their online votes — will push the foundation toward the goal.
Victoria Strong said that $1 million could make all the difference for research going forward for the disease.
“There are several groundbreaking SMA projects on the brink of unbelievable science that would not only benefit SMA, but also directly impact ALS (amyotrophic lateral sclerosis), spinal cord injury and many other disease — but funding is needed,” she said. “It sounds too simple. But after years of research, SMA is at the tipping point of change.”
Strong said she realizes it may be too late to find a cure for her daughter, but that funding promising research is their only hope at the possibility.
“We simply can not sit idle and wait for her to die. As a parent, that is impossible,” she said. “Gwendolyn is an incredible fighter, and we have to fight with her and for her. And given how close research is, there is no other option than to help get it over the finish line.”
Her body is now almost completely paralyzed, but mentally, she has developed just like any other 2-year-old.
She loves music and reading, and Strong said Gwendolyn has an enormous sense of adventure. The family said she has seen more independence since she began driving a hot-pink power wheelchair.
“This contest is a truly incredible opportunity for this little known but devastating disease,” Strong said.
“Winning this could very well mean a cure for SMA,” said Eva Turenchalk, who is helping the Strongs get the word out about the contest. “There are many worthy organizations on that list, but the $1 million would go the furthest for the Gwendolyn Strong Foundation given how close researchers are to a cure.”