June 1, 2009

Greetings SMA families, researchers and friends:

First and foremost, thank you for all you have done to help increase awareness of Spinal Muscular Atrophy (SMA) and assist in efforts to identify a treatment and cure.  With your help, we will find a treatment and cure for SMA!

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.

Today, we are issuing a “Nationwide Call to Action” for all SMA families, researchers and friends to help engage every Member of Congress in support of this legislation and we are asking for your help!  PLEASE write your Representative and Senators asking them to sign on as a Cosponsor to the “SMA Treatment Acceleration Act of 2009.”

Below is a model letter you can use to send to your Representative and Senators and a few simple steps to assist you in contacting them.  Please feel free to personalize your letters or change them 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!

Sincerely,

Kenneth Hobby
Families of SMA

Martha Slay
FightSMA

Annie Kennedy
MDA

Cynthia Joyce
SMA Foundation

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NOTE: For more information on the “The SMA Treatment Acceleration Act” please contact any one of our Government Affairs staff:
Spencer Perlman, Families of SMA, spencer@fsma.org
Caroline Gibson, FightSMA, carolinegibson@fightsma.com
Annie Kennedy, MDA, akennedy@mdausa.org
Laura Lay, SMA Foundation, llay@wswdc.com

Here are a few simple steps:

1. Write your letter based on the model letter below.  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, Caroline, Annie, or Laura’s e-mail or by sending copies of your letters to Spencer, Caroline, Annie or Laura.
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.

Click here to download the sample letter.
Click here to download the Nation Call to Action as a PDF.

Click here for more information on the SMA Treatment Acceleration Act.