Marge Shively of Los Altos and her daughter Linda continue to raise awareness about spinal muscular atrophy (SMA), the leading genetic killer of children under 2. They are now publicizing their cause via the medium of public access television.
Linda, who lost her daughter and Marge’s granddaughter Jessica to the disease in December 2005, recently hosted “What Is SMA?” on KMVT’s “AAUW Connections” program.
On the program, Linda was joined by Pat and Dick Wolff, grandparents of an SMA sufferer and financial director and chair of the regional Walk-n-Roll SMA fundraiser, and Shriya Shah and her son Sohum, 11.
The guests discussed their personal experiences and steps taken to improve awareness and fundraising locally.
One in 40 people are SMA carriers, and the disease afflicts one in 6,000 babies born, no matter the sex or ethnicity. SMA affects a child’s ability to crawl, sit, walk, swallow and breathe. Jessica died nine days before her fourth birthday.
The participants belong to Families of SMA (FSMA), a nonprofit organization that currently funds 24 research projects in four areas: Basic Research, Drug Discovery, Clinical Research and Care Research. The organization has invested $35 million in research over the past decade. It also supports and provides resources for families with relatives diagnosed with SMA.
Funds raised at the 12th annual Northern California Walk-n-Roll, scheduled Aug. 23 in Golden Gate Park, will benefit FSMA. Last year’s walk raised $64,000.
For more information, call Marge Shively at 948-3192 or visit SMAnorcal.org.
To view the video “What Is SMA?,” visit youtube.com/KMVT, search for “AAUW Connections” and scroll down the list of shows.