Families of Spinal Muscular Atrophy is dedicated to creating a treatment and cure by:
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.
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
Today, FSMA has a different story to tell: Families now
have hope. We have raised over $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. Our support comes from generous individual
donations and numerous fundraising events held by volunteer families
and our chapters.
Click here to see FSMA Results and ProgressWe are a non-profit, 501(c)3 tax exempt organization (Federal ID# 36-3320440). Funds are
specifically directed to scientific, educational or literary purposes
in keeping with a charitable organization. Today we have 29 Chapters
throughout the United States and over 70,000 members and supporters.
We are a collaborative organization where families and friends and
researchers are all working together towards the same goal.
FSMA sponsors the largest Annual International Research Conference
devoted entirely to SMA research. Dedicated researchers gather from
around the world to share results and exchange ideas, fostering a
spirit of cooperation and moving us toward our goal of finding a
treatment and cure sooner.
At the same time as the research conference, FSMA sponsors an Annual
Conference for Families to learn about the status of SMA research, gain
an understanding of the disease, share the latest in disease management
techniques, and network with other families and medical professionals.
encourage everyone touched by SMA to join our organization. All
parents of children with SMA, all people directly affected with SMA,
all relatives, friends and colleagues of those affected, are welcome to
join us as we work together to find a treatment and cure for SMA.