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How You Can End the #1 Genetic Killer of Infants: SMA

How You Can End the #1 Genetic Killer of Infants: SMA

We need your help today to cure the #1 genetic killer of infants – SMA!

What is SMA?

  • Spinal Muscular Atrophy (SMA) is a terminal, degenerative disease, often referred to as the Lou Gehrig’s disease of babies.
  • SMA is the #1 genetic killer of young children; most babies do not live beyond the age of two.
  • Newest studies show that 1 in every 35 people, or nearly 10 million Americans, UNKNOWINGLY carry the gene responsible for SMA. Most have NO family history of SMA. 
  • Although babies with SMA are born following normal pregnancies and seem perfectly healthy at birth, eventually every muscle is impacted, including the ability to walk, sit, stand, eat, breathe, and even swallow.
  • The mind always remains unaffected and children with SMA are bright and social.
  • SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
  • There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the “disease closest to treatment” of more than 600 neurological disorders.
  • Researchers estimate that a viable treatment and/or cure are attainable in as little as 5 years – IF provided adequate resources.
  • SMA is considered a “model” disease, already benefiting research into Lou Gehrig’s, Alzheimer’s, Parkinson’s, the muscular dystrophies, and many other diseases.

What You Can Do Today
Earlier this year, “The SMA Treatment Acceleration Act of 2009″ was introduced 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. 

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.

YOUR voice matters. YOU make a difference. A cure for SMA is possible!

PLEASE 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 35 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:

For more information on SMA visit:

And if you haven’t yet signed the Petition to End SMA, please sign today and forward it to your friends – Congress needs to see how many people around the country care about the babies and families affected by SMA, and how much grassroots support there is for “The SMA Treatment Acceleration Act of 2009″ – THANK YOU!

Read more: , , ,

Photo information: These are just a few of the beautiful babies affected by spinal muscular atrophy (SMA), the leading genetic killer of infants.
by Bill and Victoria Strong, parents of Gwendolyn and founders of The Gwendolyn Strong Foundation

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2 comments

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4:03PM PDT on Jul 28, 2009

I live in Australia so it's hard to get message throughto a senator because it's all US options. But I hope there reading this message and information above they need to help these poor children to live and survive.

1:23PM PDT on Jul 28, 2009

As you are saying it is the number #1 killer of babies why haven't someone stepped up to the plate to find out what we can do about this horrible decease NOW.

MAY GOD BLESS ALL OF THE CHILDREN AND PARENTS WITH CHILDREN WITH HORRIBLE DECEASE NOW AND FOR ALL TIME AS I AM SURE HE WILL!!!

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