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Gwendolyn Strong Foundation Awards $135,000 for Spinal Muscular Atrophy Research

Gene therapy, motor neuron replacement programs get boost in bid to cure top genetic killer of young children

The Gwendolyn Strong Foundation, a Santa Barbara-based nonprofit organization, has awarded a total of $135,000 to two research programs that aim to find a cure for spinal muscular atrophy, the top genetic killer of young children.

SMA is a terminal genetic disease affecting the voluntary muscles that children need to walk, sit, stand, eat, breathe and even swallow. Ninety percent of children born with SMA die before the age of 2. Currently, there is no treatment or cure for the disease.

“Our daughter is impacted by this disease,” said GSF co-founder Bill Strong. “She’s 2½ years old. We don’t have much hope that we will be able to save her. But, we will continue raising money and spreading awareness regardless if it helps our daughter.”

To drive research toward a cure, GSF awarded $75,000 to FightSMA for its partnership with Dr. Brian Kaspar at Nationwide Children’s Hospital in Columbus, Ohio, and Ohio State University. The money will allow Kaspar to push his gene therapy program closer to human clinical trials.

GSF also awarded $60,000 to Dr. Hans Keirstead at UC Irvine for his motor neuron replacement program. Results from Keirstead’s research will be relevant to SMA as well as ALS-Lou Gehrig’s disease, chronic spinal cord injury and polio, all of which are characterized by motor neuron loss.

“Both researchers have the distinct possibility of ending this disease within five years,” Strong said. “Dr. Keirstead is in the critical end stage. We have donated over $170,000 in the past year. It’s more of a marathon than a sprint.”

Keirstead said the support has been critical to his progress.

“We are forever grateful to the SMA community for their support in helping us move our discoveries from the bench to the bedside,” Keirstead said. “Together we have pioneered a first for SMA, and for the stem-cell field.”

“When faced with no options, no treatment, no cure for our daughter, you’d be doing the same thing,” Strong said. “She’s fighting for every breath; the least we can do is fight for an end to this brutal disease.”

Click here for more information on the Gwendolyn Strong Foundation or call 805.679.1679.

Noozhawk intern Andrea Ellickson, a UCSB graduate, is a journalism student at SBCC. She can be reached at .(JavaScript must be enabled to view this email address).

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