October 3, 2006 > Walk Smart for SMA

by Vidya Pradhan

Linda Shively Fernandes knew something was wrong with 3-month-old baby Jessica. When Jessica seemed to be losing the little muscle control she had gained in her young life, Linda took her to the pediatrician who quickly made a diagnosis of Spinal Muscular Atrophy.

Shriya Shah didn't get the devastating news that her baby son Sohum had SMA until he was almost 10 months old. The typical telltale signs were poor muscle control, inability to sit up and losing his earlier ability to roll over.

Spinal Muscular Atrophy (SMA) is among a group of genetic disorders that affects the nerves controlling voluntary muscle movement. One in every 6000 babies is born with SMA. Of those diagnosed before age two, 50 percent die before their second birthday. A child with SMA has difficulty crawling, walking, and even swallowing.

Linda started WALK SMART in 2003 as a way to generate awareness and raise funds for this deadly disorder. It is conducted under the aegis of FSMA (Families with SMA). Of the funds raised during this walk, up to 80 percent goes toward research into a cure for SMA. In addition, 17 percent goes to services for families affected by SMA, which include the latest technological devices to make the children comfortable and respite care. Being a volunteer driven organization, costs and expenses are kept to a very moderate 3 percent. FSMA is currently funding two multi-center clinical trials for two different drugs that have shown promise and it is the largest and most aggressive drug discovery programs ever undertaken to find a cure for SMA. FSMA has funded $20 million toward SMA research, and has already committed an additional $15 million over the next three years.

Research into SMA has had some promising results. In 1999, scientists at the Ohio State University isolated a protein that showed great promise in reversing SMA in mice. This research was largely funded by the not-for-profit organization known as Families of SMA (FSMA).

Jessica lost her fight with SMA when she was 4 years old, but ongoing research offers hope for kids like Sohum. He was part of an experimental drug trial at Stanford last year and was helped by it. He continues on the experimental drug, called Hydroxyurea and he and his family eagerly await further developments in SMA research. At 4, Sohum is a happy, social preschooler who loves life. Despite risk of infection, Sohum and his family plan to participate at WALK SMART.

The walk will be held at Lake Elizabeth in Central Park in Fremont on Oct. 7. It is a 2-mile walk around the lake, on a paved path suitable for both strollers and wheelchairs. Registration is 8:00 a.m. and the walk begins at 9:00 a.m. Entertainment includes a band and music and dance workshops. Kids are sure to love the magic show and face painting. Fremont's fire department will bring over its fire truck for everyone to enjoy and breakfast-type food will be served.

Bring your family over for a morning by the lake and show your support for this worthy cause.

For more information on WALK SMART go to www.smanorcal.org. If you cannot attend the walk but wish to show your support, go to www.firstgiving.com/WalkSmart06 to donate.

WALK SMART 2006
Saturday, Oct. 7
8:00 a.m. to Noon
Lake Elizabeth at Central Park
40000 Paseo Padre Parkway, Fremont
info@smanorcal.org
(510) 797-9717