Dear Friends,

 We are very pleased to announce that Spinal Muscular Atrophy legislation, “The SMA Treatment Acceleration Act”, will be introduced in both the U.S. House of Representatives and the U.S. Senate in the next few weeks. 

We wanted to provide each of you, SMA families, researchers and friends, with a preview of this exciting step forward for all of our individual and collective efforts to raise awareness and secure more federal resources dedicated to finding treatments and a cure for SMA. 

Once this legislation is introduced in the House and Senate, we also wanted you to know that we will be issuing a “Nationwide Call to Action” for all SMA families, researchers and friends, to help engage every Member of Congress in support of this bill. 

The proposed legislation, “The SMA Treatment Acceleration Act”, has been developed through a collaborative effort of the SMA Foundation, Families of SMA and FightSMA and is modeled on other disease-specific legislation currently before Congress or that has been previously considered and became law.

Specifically, “The SMA Treatment Acceleration Act” would provide for the following:

• Federal support for a national clinical trials network for SMA;
• Federal support to enhance the existing SMA patient registry and for expanded research on the epidemiology of SMA;
• Establishes an SMA Coordinating Committee to include federal agencies, SMA researchers, and SMA families;
• Establishes a trans-Institute research collaboration at NIH under the Director of NIH to ensure all relevant Institutes at NIH are contributing and collaborating on SMA research;
• Requires the Secretary of the U.S. Department of Health and Human Services (HHS) to study and report to Congress on ways to improve existing incentives, as well as to recommend additional incentives, necessary to promote SMA drug development among private industry;
• Lastly, the bill provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public

The launch of this exciting initiative would not be possible without the active support of key Members of the House and Senate who have agreed to lead the effort as sponsors of this legislation.  We look forward to joining with these Members in the official public announcement of the bill’s introduction, which we hope will occur no later than July. Some of these Members will be familiar to you as they have been long time friends of the SMA community and others are more recent and most welcome champions of SMA! 

Lastly, let us again note the important role that we hope each of you can play to help ensure the success of this legislation.  Getting a bill introduced in Congress is just the very first step and we will need your help to encourage each and every one of your Members and Senators to join the cause.  It will take time, effort, patience, determination, and most importantly, your help! 

Just as soon as the bill is formally introduced in the House and Senate, we will be issuing a “National Call to Action” on the SMA Treatment Acceleration Act where we will provide all the necessary materials for you to be able to call, write or email your Members of Congress to ask them to join the fight for treatments and a cure for SMA by cosponsoring the SMA Treatment Acceleration Act.  

Sincerely,

 

Cynthia Joyce                                    Kenneth Hobby                                                Martha Slay

SMA Foundation                                  Families of SMA                                                 FightSMA

 

NOTE: If you have any questions, please feel free to contact any one of our Government Affairs staff:

 

Laura Breiteneicher                        Spencer Perlman                             Caroline Gibson

SMA Foundation                                Families of SMA                                FightSMA

laurab@wswdc.com                           spencer@fsma.org                             carolinegibson@fightsma.com