Local family continues battle against SMA

As their surname implies, the Strongs are fighters.
 
When their daughter, Gwendolyn, was diagnosed with spinal muscular atrophy, or SMA, six months after her seemingly normal birth in October 2007, local residents Bill and Victoria Strong didn’t simply roll over and accept their fate.
 
Instead, they launched a foundation dedicated to raising funds for SMA research. They created an online petition to drum up support for congressional legislation to accelerate research of the disease, which is the No. 1 genetic killer of young children.
 
And this past summer, they plastered a recreational vehicle with stickers promoting their cause and trekked across the country with Gwendolyn, raising awareness and nearly $50,000 en route to a visit with their daughter’s 104-year-old great-grandfather in Mississippi.
 
Their efforts are paying off in a big way.
 
Facebook users recently voted the Gwendolyn Strong Foundation as one of the top 100 organizations out of more than 500,000 groups in the first round of the $5 million Chase Community Giving campaign.
 
The nonprofit organization netted a $25,000 grant and advanced to the next round of voting for a chance to win up to $1 million.
 
“If I didn’t say we were shocked, I’d be lying,” Bill said.
 
He credited their background in online marketing, noting they used every resource at their disposal — their blog, Twitter, Facebook and simple word-of-mouth — to get people to vote in their favor.
 
After receiving the $25,000 grant, the Strongs promptly fired off a check in the same amount to a promising SMA program at UC Irvine involving stem cell research.
 
“It’s literally already being used in the lab to accelerate research,” Bill said, adding that the research group could move into clinical trials by next year.
 
SMA is a terminal and degenerative disease that affects voluntary muscles in infants and children, gradually impacting their ability to walk, sit, breathe or even swallow. But a cure is within research and researchers have said, given the appropriate resources, the disease could be cured within the next five years.
 
“To learn that there is research on the horizon that is so close to potentially saving these children, how could we not be doing everything we could to support that research?” Bill said.
 
Also, SMA is considered a gateway disease, he said, meaning that any breakthrough on spinal muscular atrophy in particular could lead to further advances in the general field of degenerative diseases.
 
“It literally could lead to a cure for ALS — Lou Gherig’s disease — and other diseases such as Alzheimer’s and Parkinson’s,” he said.
 
The foundation will donate any additional funds it receives during the second round of voting to SMA awareness and research programs — and plans to organize an online voting campaign of its own to determine how the proceeds are distributed.
 
Voting begins on January 15 and runs through January 22. More information is available at www.gwendolynstrongfoundation.org or through Facebook at www.causes.com/gsf.

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