About legislation H.R. 2149, S. 1158 (111th Congress):
Investigators, clinicians, and families are working to find a treatment or cure for spinal muscular atrophy (SMA). The SMA Treatment Acceleration Act supports these efforts with federal funding. The legislation authorizes federal funding in order to:
Spinal muscular atrophy (SMA) is a hereditary disorder that destroys the nerves controlling voluntary muscle movement. It is the No. 1 genetic killer of children under age 2. SMA is a relatively common "rare disorder." It is estimated that SMA occurs in about 1 in every 6,000 births. Approximately 1 in 40 individuals (7.5 million Americans) carries the gene that causes SMA, making it the second most common autosomal recessive genetic disorder. This incidence rate shows neither racial nor gender bias.
Presently, there is no known treatment for SMA, but there have been several exciting research breakthroughs over the past decade. Among more than 600 neurological disorders, SMA has been identified by the National Institutes of Health as being one of the diseases closest to treatment based on scientists' advanced genetic understanding of the disease.
The SMA Treatment Acceleration Act provides federal support to complement the substantial private funding that national nonprofit organizations are investing to find a treatment for SMA. Passage of this landmark legislation will enable investigators to mount national clinical trials to demonstrate that identified therapeutics are safe and effective for people with SMA.
In the previous Congress, similar legislation was introduced and received terrific support. The House bill was sponsored by Rep. Patrick Kennedy, D-R.I., and had 70 co-sponsors, including 49 Democrats and 21 Republicans. Sen. Debbie Stabenow, D-Mich., sponsored the Senate bill which had 19 co-sponsors (15 Democrats, two Independents and two Republicans).
On the record:
Support Letters from the SMA Government Relations Team: