Families of Spinal Muscular Atrophy Celebrates 25th Anniversary. December 5, 2008
In 2009, the entire Spinal Muscular Atrophy community – families, patients, researchers, clinicians – will celebrate the 25th Anniversary of Families of SMA. The story behind this anniversary – of its progress and accomplishments – is a story about dedication and determination. A small group of parents started Families of SMA in 1984. They wanted to raise funds for SMA research to cure the disease, and support all affected families.
Back then, very little was known about Spinal Muscular Atrophy. It was frequently misdiagnosed. Very little research was being conducted. No one knew the cause of the disease let alone how to find a treatment and a cure. There were no family support services and no clinical trials. Patients and families affected by SMA were on their own and had little hope.
Click here to see our Anniversary Report:
Today, FSMA has a different story to tell: Families now have hope. Our goal for 2009 is to have raised $50 million for SMA research. Families of SMA funds and directs the leading SMA research programs. Families of SMA has created hope for our community that did not exist in 1984.