Greetings SMA Families, Researchers and Friends

First and foremost, thank you for all you have done to help us increase awareness and attention to finding a treatment or cure for Spinal Muscular Atrophy (SMA).  We are especially grateful to all of you who have taken the time to contact your Members of Congress in support of The SMA Treatment Acceleration Act (H.R. 3334/S. 2042).

Many exciting events have taken place in our advocacy efforts.  Most importantly, we are very pleased that the Muscular Dystrophy Association (MDA) has endorsed The SMA Treatment Acceleration Act.  The MDA has joined the effort to build community and congressional support for the bill through grassroots and direct advocacy.  We are confident that these efforts will build upon and enhance the robust and effective education and advocacy campaign already in place.

Thanks to our grassroots efforts, 60 Members of the House of Representatives and 18 Senators have now signed on to the SMA Treatment Acceleration Bill.  Those Members are listed below.

In order to keep this bill moving through the legislative process, we need to continue to grow the number of cosponsors of the bill. More than ever, we need your help!  Please contact your Members of Congress to ask them to cosponsor the SMA Treatment Acceleration Act.

As most of you are aware, the SMA Treatment Acceleration Act, introduced in the U.S. House of Representatives by Congressmen Patrick Kennedy (RI) and Eric Cantor (VA) and in the U.S. Senate by Senators Debbie Stabenow (MI) and Johnny Isakson (GA), provides federal support to complement the substantial private funding that our national non-profit organizations are investing to find a treatment for SMA.  Passage of this landmark legislation will enable scientific investigators to mount national clinical trials and demonstrate that potential treatments are safe and effective for SMA patients.

Below are a few simple steps to assist you in contacting your Member.  We also have attached a sample letter you can use to send to your Member of Congress and Senators.  Please feel free to personalize your letter as you feel comfortable.  While this will take just a few minutes of your time, it will make a great difference!

THANK YOU AGAIN for your help for all those with SMA!

Sincerely,

NOTE: If you have any questions about the SMA Treatment Acceleration Act, please feel free to contact any one of our Government Affairs staff: Laura Breiteneicher of the SMA Foundation (laurab@wswdc.com / 202-589-0800), Spencer Perlman of Families of SMA (spencer@fsma.org / 202-333-5750), Caroline Gibson of Fight SMA (carolinegibson@fightsma.com / 804-515-0080) or Annie Kennedy of the Muscular Dystrophy Association (akennedy@mdausa.org / 202-828-8560).

Current Cosponsors:

Here are a few simple steps:

1. Write your letter based on this sample draft letter.  (NOTE: The yellow highlighted areas should be changed/personalized.) 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 in 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 Laura, Spencer, Caroline or Annie’s e-mail or by sending copies of your letters to Laura, Spencer, Caroline or Annie.

5. As Members of Congress and Senators sign on to be Cosponsors of “The SMA Treatment Acceleration Act”, 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.