Back in 2003, Linda Shively, daughter of Marge and Jim Shively of Los Altos, started the Northern California Walk-n-Roll fundraiser to help find a cure for spinal muscular atrophy. The disease, which affects the motor nerve cells in the spinal cord, had left Linda’s newborn daughter Jessica severely debilitated.
Eighteen years later, the fundraiser is still happening, this time as a virtual event. The Walk to Cure SMA is scheduled Saturday, combining walks from all over the country. Proceeds support the nonprofit Cure SMA, which is dedicated to eradicating the disease.
Jessica wasn’t able to sit independently, crawl or walk, and she had trouble breathing. But the toddler persevered. Linda’s daughter lived to nearly 4 years old. Jessica died in December 2005.
The Shively family remains inspired by Jessica’s memory to continue involvement in the fight against SMA, considered the No. 1 genetic cause of death for infants.
Marge noted there has been progress since those early days. Recently, the U.S. Food and Drug Administration approved Evrysdi (risdiplam), a daily, orally administered therapy to treat SMA in adults and children 2 months and older – which aligns with the populations studied in its clinical trials.
All proceeds from the fundraiser go directly to Cure SMA.
To donate, make checks payable to Cure SMA and send to Cure SMA, PO Box 3831, Los Altos 94024.
To participate in the walk and for more information, visit events.cureSMAorg/norcalwalk.