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Call To Action: Write Your Congresspeople To Help END SMA!

July 26, 2009 by Bill Strong

Even if you've already written your Congresspeople

about the "SMA Treatment Acceleration Act",

we need you to write them one more time

to help get this legislation passed!

Earlier this year, the "SMA Treatment Acceleration Act of 2009" was reintroduced in both the United States Senate and United States House of Representatives. The SMA Treatment Acceleration Act of 2009 provides federal support to complement the substantial private funding that is being invested to find a treatment for SMA. Passage of this landmark legislation will enable scientific investigators to expedite national clinical trials and demonstrate that potential treatments are safe and effective for SMA patients.

Although a version of this bill made great progress last year (over 20% of each legislative body), technically this is a brand new bill and so we must start from scratch to gather support. Currently, the "SMA Treatment Acceleration Act of 2009" has 7 cosponsors in the Senate and 28 cosponsors in the House (click here for a list of cosponsors). This is not nearly enough support. In order for this legislation to pass and CURE SMA -- we need Congress to know that their constituents are in favor of this important bill. Please join the fight and be an advocate for children with SMA by writing your Senators and Representatives and letting them know that the "SMA Treatment Acceleration Act of 2009" and the children dying of this disease are worth their attention.

NOW is the time. We need YOUR HELP to get the "SMA Treatment Acceleration Act of 2009" PASSED THIS YEAR. We need YOUR HELP to END SMA.

---> EMAIL YOUR UNITED STATES SENATORS AND REPRESENTATIVES!!!

YOUR voice matters. YOU make a difference.

---> EMAIL YOUR UNITED STATES SENATORS AND REPRESENTATIVES!!!

HERE'S HOW:

United States Senators

  • Click here to search for the Senators from your state.
  • When you find your Senators, click on the "Web Form" link underneath their name that will take you to a form that you can use to email your specific Senators.
  • If you are unsure of what to write, consider using the following as a template by copying and pasting the text into the form:

As your constituent, I am writing to you today to ask you for your support of S. 1158 "The SMA Treatment Acceleration Act of 2009, which has been introduced by Senator Debbie Stabenow (D-MI), Senator Johnny Isakson (R-GA), and Senator Sheldon Whitehouse (D-RI). This bipartisan legislation will go a long way in our efforts to find a cure for Spinal Muscular Atrophy (SMA), the leading genetic killer of young children.

As you may know, SMA is a hereditary disorder that destroys the nerves controlling voluntary muscle movement. It is the number one genetic killer of children under the age of two. 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) carry the gene that causes SMA, making it the second most common autosomal recessive genetic disorder. SMA kills more children than any other genetic disease. This incidence rate shows neither racial nor gender bias.

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 singled out by the National Institutes of Health as the disease closest to treatment based on scientists advanced genetic understanding of the disease.

In order to build on all the promising research efforts to date and to develop actual treatments for patients, the The SMA Treatment Acceleration Act of 2009" provides federal support to upgrade and unify existing clinical trials networks and establish a national clinical trials network for SMA; enhances the existing SMA patient registry in order to expand research on the epidemiology of the disease; establishes a SMA Coordinating Committee to include federal agencies, SMA researchers, and SMA families that must study barriers to drug development for SMA and provide legislative recommendations to Congress to address the issue; establishes a trans-Institute research collaboration at NIH to ensure all relevant Institutes are contributing and collaborating on SMA research; requires the Secretary of the Health and Human Services (HHS) to study and report to Congress on ways to improve existing incentives for drug development; and establishes an informational and educational program on SMA for health professionals and the general public.

As your constituent, I ask that you sign on as a cosponsor of the The SMA Treatment Acceleration Act of 2009".

With your help, there is real hope for finding a treatment and cure for SMA. Thank you, in advance, for your consideration and I look forward to hearing back from you.

United States Representatives

  • Click here to search for the Representative for your district.
  • Select your state, enter your zip-code, and click "Contact My Representative".
  • Enter your personal information and click "Continue To Text Entry Form".
  • If you are unsure of what to write, consider using the following as a template by copying and pasting the text into the form:

As your constituent, I am writing to you today to ask you for your support of H.R. 2149 The SMA Treatment Acceleration Act of 2009, which has been introduced by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA). This bipartisan legislation will go a long way in our efforts to find a cure for Spinal Muscular Atrophy (SMA), the leading genetic killer of young children.

As you may know, SMA is a hereditary disorder that destroys the nerves controlling voluntary muscle movement. It is the number one genetic killer of children under the age of two. 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) carry 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, though there have been several exciting research breakthroughs over the past decade. Among more than 600 neurological disorders, SMA has been singled out by the National Institutes of Health as the disease closest to treatment based on scientists advanced genetic understanding of the disease.

In order to build on all the promising research efforts to date and to develop actual treatments for patients, the The SMA Treatment Acceleration Act of 2009 provides federal support to upgrade and unify existing clinical trials networks and establish a national clinical trials network for SMA; enhances the existing SMA patient registry in order to expand research on the epidemiology of the disease; establishes a SMA Coordinating Committee to include federal agencies, SMA researchers, and SMA families that must study barriers to drug development for SMA and provide legislative recommendations to Congress to address the issue; establishes a trans-Institute research collaboration at NIH to ensure all relevant Institutes are contributing and collaborating on SMA research; requires the Secretary of the Health and Human Services (HHS) to study and report to Congress on ways to improve existing incentives for drug development; and establishes an informational and educational program on SMA for health professionals and the general public.

As your constituent, I ask that you sign on as a cosponsor of the The SMA Treatment Acceleration Act of 2009".

With your help, there is real hope for finding a treatment and cure for SMA. Thank you, in advance, for your consideration and I look forward to hearing back from you.

For more information on the legislation, please:

  • Click here for the United States Senate version (S. 1158).
  • Click here for the United States House of Representatives version (H.R. 2149).

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