Dear Family and Friends of Gwendolyn:
Although relatively unknown, Gwendolyn's disease, Spinal Muscular Atrophy (SMA), is the number one genetic killer of children under the age of 2 and is estimated to occur in nearly 1 out of every 6,000 births. SMA is an inherited disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing. SMA is caused by the mutation of a single gene which is extremely advantageous for genetic screening and therapeutic development. The gene mutation that causes SMA is carried by one in every 40 people, or approximately 7.5 million Americans. Based on the current advanced genetic understanding of SMA, the disease was selected by the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) as the disease closest to treatment of more than 600 neurological disorders. There are several researchers that estimate we are as close as only a few years away from finding a treatment and/or cure for this horrible disease, however, additional resources are needed to make that last and crucial leap.
Towards that end, legislation has been proposed for the first time in the United States Congress to allocate federal resources to non-profit and research organizations focused on finding a treatment for SMA. The SMA Treatment Acceleration Act was introduced in the House of Representatives by Rep. Patrick Kennedy (D-RI) and Rep. Eric Cantor (R-VA) and in the Senate by Sen. Debbie Stabenow (D-MI) and Sen. Johnny Isakson (R-GA) in August 2007 and September 2007, respectively. The Act is supported by Families of SMA, the SMA Foundation, Fight SMA, and the Muscular Dystrophy Association. In our opinion, this is a pivotal step towards finding a treatment and/or cure for SMA.
As you know, legislation like this will only move through Congress with broad support and Members are significantly more likely to cosponsor and support legislation if their constituents are actively urging them to lobby for support of the bill on their behalf. Thus, we need your help to make sure your Senators and district Representatives know that this is an important piece of legislation to cosponsor. Write letters, call, email, fax, track them down — whatever works for you will all help.
Here are a few resources to help you contact your local Senators and district Representatives:
United States Senators
Click here to find and contact your Senators
United States House of Representatives
Click here to find and contact your district Representative
If you are unsure of what to write to your Members, here are template letters for the Senate and the House provided by the Muscular Dystrophy Association that you can download:
Click here for the letter addressed to Senators
Click here for the letter addressed to Representatives
Here are a few resources if you are interested in learning more about the actual proposed Acts or want to know who is currently cosponsoring the legislation:
House of Representatives ~ SMA Treatment Acceleration Act H.R. 3334
Click here to view the House of Representatives version of the proposed Act (H.R. 3334)
Click here to view the current House cosponsors of the proposed Act
Senate ~ SMA Treatment Acceleration Act S. 2042
Click here to view the current Senate cosponsors of the proposed Act