Fri10242014

Community

Volunteers gather to aid in fight against genetic spinal disease


Courtesy of Marge Shively
Members of Families of Spinal Muscular Atrophy gather annually to support fundraisers by preparing mailings. This year’s group includes, front, from left: Nancy Cook, Marge Shively, Keiko Hayashi, Linda Thomason and Irene Ogawa; back: Ann Roper, Pat Wolff, Annemarie Rosengreen and Don McCauley.

For the past 12 years, local volunteers have banded together annually to prepare mailings in support of fundraisers for Families of Spinal Muscular Atrophy.

Los Altos resident Marge Shively organized the nonprofit group after her daughter Linda’s daughter, Jessica, was diagnosed with Spinal Muscular Atrophy (SMA).

SMA is a genetic disease that destroys the nerves that control voluntary movement, which can prevent affected children from crawling, walking or, in severe cases, even lifting their heads. Families of Spinal Muscular Atrophy aims to provide information, guidance, encouragement and hope to families with a loved one suffering from SMA.

This year’s mailing includes the announcement of the 11th annual Northern California Walk-n-Roll across America, scheduled to begin 10 a.m. Aug. 24 in Golden Gate Park. Last year’s Walk-n-Roll raised more than $115,000 with the aid of a matching grant.

“Eleven years ago we started this walk when my daughter Jessica was one and a half years old,” Linda said. “I couldn’t sit back and do nothing. I wanted to make a difference – and make a difference we have.”

Linda offered thanks to those who continue to support Families of Spinal Muscular Atrophy.

“Significant progress has been made in research toward finding a treatment and a cure for SMA,” she said.

To donate, make checks payable to FSMA and mail to FSMA, PO Box 3831, Los Altos 94024.

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

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