Marge and Jim Shively of Los Altos Hills have devoted the past 20 years to finding a cure for spinal muscular atrophy, a disease affecting the central nervous system that is the No. 1 genetic cause of death in infants.
The Shivelys’ granddaughter Jessica was diagnosed with SMA at 3 months old in 2002; she died three years later.
The couple and their daughter, Linda, Jessica’s mother, have since committed their time and energy to raising funds for research efforts, launching the signature local fundraiser, the NorCal Walk-n-Roll for SMA. This year’s event is scheduled 10 a.m. Saturday at Kennedy Grove Regional Recreation Area in El Sobrante.
When Linda started the Walk for SMA event in 2003, there were no treatments for SMA. Today, with decades of donations, there are three U.S. Food and Drug Administration-approved treatments and approximately 20 other treatments in the drug pipeline. California and 46 other states now have newborn screening for SMA.
“We are so grateful for your support in the past and hope you will continue to help us financially again this year,” the Shivelys said in a press release. “We are so close to finding a cure.”
Their cumulative goal is to raise $1.25 million, with all proceeds directed to Cure SMA, a nonprofit organization dedicated to eradicating SMA.
“One in 50 people are carriers, and it afflicts one in 11,000 babies born, regardless of sex or ethnicity,” the Shivelys said. “It is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat or breathe.”
Their continuing efforts honor the memory of Jessica.
“Jessica died nine days before her fourth birthday, having brought joy to all who knew her,” the couple said. “She was extremely happy and intelligent.”
Cure SMA has invested $82 million in SMA research since 1984. It invests in three research areas: basic research, drug discovery and clinical research. Eighty cents of every dollar raised is used to fund research, patient services, family support and awareness programs. Cure SMA has provided new programs to support the SMA community during the pandemic.
To donate to the cause and for more information, visit walk.CureSMA.org/norcal. Donors can walk, support Jessica’s Joyful Team financially or send a check payable to “Cure SMA” to NorCal Walk-n-Roll, Cure SMA, 925 Busse Road, Elk Grove Village, IL 60007.
