Monday, June 1, 2009

SMA Treatment Acceleration Act Back in Congress

I am very late in getting this announced, (and I'm sure many of you know about this already) but the Spinal Muscular Atrophy Treatment Acceleration Act has been reintroduced into both the House of Representatives and the Senate! Please make sure your household members have signed the petition, and take a few moments to contact your Senators and Congressmen/Congresswomen. It doesn't take but a few moments, and you can call them or email them regarding the Act and how you would like to see it passed. Find your Senator here and your Congressman here. Be sure to mention the bill numbers: in the House it's H.R. 2149 and in the Senate it's S.1158.

Remember, this is a bill that already has bipartisan support. It will help towards treatment and a cure for SMA, and perhaps a treatment for SMARD as well. Please take just a few moments to help garner support for the Act by contacting your reps!

What you might like to mention when you email/call:
  • SMA is the number one genetic killer of children under 2
  • One in 40 people carry the gene that causes SMA, making it very common
  • The NIH chose SMA as one of the diseases closest to treatment and cure (we are talking years here, not decades!!!)
  • The SMA Treatment Acceleration Act may also benefit other neuromuscular diseases, such as Tay-Sachs, Duchenne Muscular Dystrophy, and (maybe--cross fingers!!!) SMARD (Dakin's condition)


Sky said...

it is so exciting to think, they could pass this, that would mean the world to our kids

Mandy said...

I will pray that good things come your way and that it gets passed!!