Last updateTue, 19 Sep 2017 5pm


Volunteers support fight against spinal disease

Courtesy of Marge Shively
Volunteers supporting Families of Spinal Muscular Atrophy include, from left, Annemarie Rosengreen, Jane Halligan, Nancy Traficanti, Judy William, Irene Ogowa (in back), Don McCauley and Nancy Cook.

For the past 13 years, local friends have gathered for an annual “stuffing party” to prepare mailings in support of fundraisers for the nonprofit Families of Spinal Muscular Atrophy (FSMA). The most recent mailing promotes the 12th annual Northern California Walk-n-Roll Aug. 23 in San Francisco’s Golden Gate Park.

According to FSMA representatives, SMA is the leading genetic killer of children under 2. The disease destroys the nerves that control voluntary movement. Children born with SMA may never crawl, walk or even lift their heads.

Los Altos Hills resident Marge Shively founded FSMA after her grandaughter Jessica was diagnosed with SMA at 3 months old.

The organization supports those affected by SMA through information, resources and equipment. According to Shively, FSMA-funded research provides hope for the development of a treatment and cures.

“Our walks and newsletters have raised over $550,000 toward SMA research,” she said.

Shively expressed excitement about a recent breakthrough – Isis Pharmaceuticals Inc. announced a new clinical trial Aug. 1.

“This is the first-ever Phase 3 trial for a new drug developed to treat the underlying cause of SMA, with original funding coming from Families of SMA, where funds come from efforts like the (Walk-n-Roll).”

In addition to Shively, volunteers at the “stuffing party” included Helen Cone, Nancy Cook, Laura Giswald, Jane Halligan, Carolyn Ireland, Don McCauley, Irene Ogowa, Marlys Okada, Sandra Overton, Kathy Radford, Ann Roper, Annemarie Rosengreen, Nancy Traficanti, Barbara Waldeck, Jackie Wallace, Judy William, Kay Willoughby and Pat Wolff.

To donate, mail a check made out to FSMA to PO Box 3831, Los Altos 94024.

To register for the walk, visit SMAnorcal.org.

For more information, call Marge Shively at 948-3192 or visit cureSMA.org.

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