Joe Wilson

BILL WOULD INCREASE NEEDED FUNDING FOR DEVASTATING GENETIC DISEASE

South Carolina Congressman Joe Wilson is taking an important lead on combating a neuromuscular disease that affects approximately one in 6000 babies born and is the leading genetic killer of children under the age of two.

Last week, Wilson sponsored the “Spinal Muscular Atrophy (SMA) Treatment Acceleration Act of 2009,” which would go a long way toward finding a treatment and cure for SMA.

“I am grateful to be a part of this effort to raise awareness and increase research into Spinal Muscular Atrophy,” Wilson said. “Having had the honor of working in the State Senate to establish a statewide cancer registry in South Carolina, I am particularly encouraged by the inclusion of a National Spinal Muscular Atrophy Patient Registry in this legislation.”

The bill was introduced in the House by Reps. Eric Cantor (R-Va.) and Patrick Kennedy (D-R.I.) and in the Senate by Sens. Johnny Isakson (R-Ga.) and Debbie Stabenow (D-Mich.) in the U.S. Senate. Currently, both H.R. 2149 and S.1158 are stuck in committee.

SMA is a hereditary disorder that destroys the nerves controlling voluntary muscle movement. Approximately one in 40 individuals (7.5 million Americans) carry the gene that causes SMA, making it the second most common autosomal recessive genetic disorder.

Presently, there is no known treatment for SMA, though 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.

If passed, the bill would provide federal support to complement the substantial private funding that national non-profit organizations are investing to find a treatment for SMA. Passage of this landmark legislation would enable investigators to mount national clinical trials to demonstrate that identified therapeutics are safe and effective for SMA patients.

According to the SMA Foundation, the legislation would authorize federal funding to:

• Upgrade and unify SMA clinical trials sites and establish a national clinical trials network for SMA.

• Establish a Data Coordinating Center to provide expert assistance and advice to SMA clinical trials sites.

• Expand and intensify federally supported research programs with respect to pre-clinical translational research related to SMA.

• Enhance the SMA patient registry and for expanded research on the epidemiology of SMA.

• Establish an Interagency SMA Research Coordinating Committee, consisting of representatives from relevant government agencies and the public, to coordinate government activities relating to SMA, develop a comprehensive strategy for improving and expanding SMA research, make recommendations to strengthen collaborative research across multiple institutes at NIH, and identify barriers to the development of drugs for treating SMA.

• Promote collaborative research at the National Institutes of Health to ensure cooperation across multiple Institutes regarding research related to SMA.

• Establish and implement a program for providing information and education on SMA to health professionals and the general public related to advances in the screening, diagnosis and treatment of SMA and the provision of care to SMA patients.

For more information on what you can do to get your Senator or Representative to sponsor this important legislation, click here.

by Adam Fogle
The Palmetto Scoop