Benefit supports spinal muscular atrophy research

Courtesy of Marge Shively
Volunteers stuff envelopes for the Walk-n-Roll fundraiser for spinal muscular atrophy. Pictured are, seated from left: Judy Doty, Walk co-chairwoman Krisie Nguyen, Ann Roper, Walk co-chairwoman Marge Shively, Rory Kaplan and Carolyn Ireland. Standing: Jane Halligan, Nancy Grippo, Nancy Cook, Joyce Johnsen, Carol Hackford, Peter Meigs, Lois Rosenblum, Walk co-chairwoman Pat Wolff. Not pictured: Judy William, Don McCauley, Vicki Oldberg, Judi Gentry, Kathy Radford, Annemarie Rosengreen, Marguerite Cardinal, Pat Frankenfeld and Marge Meigs.

Los Altos residents Marge and Jim Shively’s granddaughter, Jessica, was diagnosed with spinal muscular atrophy at 3 months old in 2002. She died three years later, just shy of her fourth birthday. The Shivelys and their daughter, Linda, Jessica’s mother, have since dedicated their time and energy to finding a cure for the disease.

SMA is the No. 1 genetic cause of death in infants. One in 50 people are carriers, and it afflicts one in 10,000 babies born, no matter the gender or ethnicity. SMA affects a child’s ability to crawl, sit, walk, swallow and breathe.

A breakthrough in SMA treatment occurred in May, when the U.S. Food and Drug Administration approved Zolgensma, an intravenous gene therapy. According to the Shivelys, such advances are made possible through the support of the SMA community and the contributions the nonprofit Cure SMA receives for research programs.

Cure SMA invests in four research areas: Basic Research, Drug Discovery, Clinical Research and Care Research, as well as provides families the support they need.

Cure SMA’s milestones include:

• Investing more than $80 million in research.

• Providing research funding for Spinraza and Zolgensma, the first approved therapies for SMA.

• Providing funding for 21 additional programs in development, including six clinical trials.

• Supporting nearly 4,000 SMA families with services annually.

Cure SMA’s signature fundraiser, the annual Walk-n-Roll for SMA, is scheduled 10 a.m. to 1 p.m. Saturday at Kennedy Grove Regional Recreation Area in El Sobrante. All proceeds directly support Cure SMA. In addition to the walk, the event will include lunch, face painting, balloon art, entertainment and a drawing.

For more information, visit

To donate, send checks made out to “Cure SMA” to Cure SMA, PO Box 3831, Los Altos 94024.

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