Courtesy of Marge Shively
More than 20 supporters of spinal muscular atrophy research stuffed envelopes for the annual walk and donation request. Volunteers included, front row, from left: Marilyn Martin, Judy William and Marge Shively. Back: Ann Werry, Betty McMahon, Kayla McMahon, Lois Rosenblum, Jane Halligan, Pat Wolff and Barbara Mordo.
When Los Altos residents Marge and Jim Shively’s granddaughter, Jessica, was born with spinal muscular atrophy 15 years ago, there was no treatment for the debilitating disease.
Over the past decade, advances have been made and treatment for SMA is now available, thanks in part to the efforts of Cure SMA, a nonprofit organization aimed at fighting the disease. The drug Spinraza, offered through Biogen Inc., received U.S. Food and Drug Administration approval last December.