April 20, 2010

Greetings SMA families, researchers and friends:

Thank you for all you have done to increase awareness and attention towards efforts to accelerate treatment and cure discovery for Spinal Muscular Atrophy (SMA). We are especially grateful to all those who have taken the time to contact their Members of Congress in support of The SMA Treatment Acceleration Act (H.R. 2149/S. 1158).

As most of you are aware, for the past 15 months health care reform has consumed the attention of Members of Congress and their health care staff. Now that Congress has completed its work on health care reform, Members and staff are in the process of determining which outstanding health-related bills will be acted upon by Congress before the 111th Congress comes to a close this fall. As Members and staff begin to decide which pieces of legislation will move this Congress, it is important that we continue to engage every Member of Congress in support of the SMA Treatment Acceleration Act.

Thanks to your efforts, 90 Members of the House of Representatives and 15 Senators have now signed on to the SMA legislation. Our goal continues to be to encourage as many Members as possible to cosponsor, with particular attention paid to Members who cosponsored the bill in the previous (110th) Congress but have not yet signed on to the bill again in the current (111th) Congress. A list of our current cosponsors, as well as our target House and Senate cosponsors from the 110th Congress, are provided below. Once again we ask for your help, the time to act is now! PLEASE contact your Members of Congress to ask them to cosponsor the SMA Treatment Acceleration Act.

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 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.

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

Sincerely,

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NOTE: If you have any questions about the “SMA Treatment Acceleration Act” or for more information, please feel free to contact any one of our Government Affairs staff:

Spencer Perlman, Families of SMA, spencer@fsma.org
Caroline Gibson, FightSMA, carolinegibson@fightsma.com
David Miller, MDA, dmiller@mdausa.org
Laura Lay, SMA Foundation, llay@wswdc.com

For a hard copy of this update, click here.