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The SMA Treatment Acceleration Act
Backround Information on The SMA Treatment Acceleration Act

The SMA Community is very pleased to announce that legislation to enhance federal support for SMA research, H.R. 2149/S. 1158, the “SMA Treatment Acceleration Act of 2009”, has been introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA) and in the U.S. Senate by Senator Debbie Stabenow (D-MI) and Senator Johnny Isakson (R-GA).  On behalf of our organizations and the families affected by this devastating disease, we want to express our gratitude and thanks to Congressmen Kennedy and Cantor and Senators Stabenow and Isakson for their leadership.

Outreach to Members of Congress by the SMA Community:

Families of SMA encourages all of its member families and supporters to contact and continue contacting their Representative and Senators to urge them to cosponsor the SMA Treatment Acceleration Act. An active grassroots campaign is crucial to forging a critical mass of congressional support for the bill and moving it through the legislative process towards passage and enactment into law. Legislation cannot move through Congress unless there is broad demonstrated support from several Members of Congress, and Members of Congress are significantly more willing to cosponsor and support legislation if their constituents are actively lobbying on the bill’s behalf.

Here are a few simple steps:

1. Write your letter based on the model here:
Click here to open the letter. 
If you are unsure of who your Member of Congress and Senators are please feel free to contact us and we will help you figure that out.

2. We encourage you to make your letter as personal as possible, feel free to add your personal story or send pictures along with your letter.

3. Once you have completed your letter, if you have email, please email your letter to your Member of Congress and Senators.  Or if you prefer, fax your signed letters to your Member of Congress and Senators.  Your Member of Congress and Senators e-mail and fax number can be found on the House of Representatives website www.house.gov or Senate website www.senate.gov.  If you send by mail, please note that mail going to the U.S. Capitol is still being screened for anthrax so it often takes weeks to get there.  So if you can, please email or fax!

4. Lastly, let us know when you have sent the letter via email or fax!  You can do so by simply adding a cc: to your email to spencer@fsma.org or by sending copies of your letters to Spencer at the National Office of FSMA.

5. As Members of Congress and Senators sign on to be Cosponsors of “The SMA Treatment Acceleration Act 2009”, we will send you updates!  When you see your Members of Congress and Senators names, you will know that these few minutes have been worth your time!  And if you don’t see their names, we will ask that you contact them again to remind them of your request!

6. Remember, you are their constituent and their job is to help address the issues you care most about.

You are already making a difference: as a direct result of your calls, emails, and faxes to your Members of Congress support is growing. This can only happen with your help – your Members need to hear from you.

This website contains instructions on how to identify your Members of Congress, tips for contacting them, and a sample letter and talking points. We strongly urge you to take the time to participate in this important grassroots effort and to ask your family and friends to join you.

Contact Families of SMA with Questions

Please do not hesitate to contact Families of SMA at info@fsma.org or (800) 886-1762 if you have any questions about the bill or how to contact your Members of Congress. With your assistance, we can build further support for the SMA Treatment Acceleration Act and begin moving the bills through the legislative process.


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