Dear Friends,
We are well under way with our efforts on the SMA Treatment Acceleration Act. As you know, the bill was reintroduced in the 111th Congress in April by our lead sponsors: Rep. Patrick Kennedy (D-RI) and Rep. Eric Cantor (R-VA) in the House, and Sen. Debbie Stabenow (D-MI) and Sen. Johnny Isakson (R-GA) in the Senate.
As you are probably well-aware, both houses of Congress have been focused on Health Care Reform over the past several months. The Health Care Reform bills have required a tremendous amount of focus, attention, and effort from our Members of Congress, as well as health staffers, on both sides on the aisle. We have been told by multiple health staffers that they have been inundated with emails, meetings, and health care reform related work that has made it virtually impossible to steer their focus to any other issue at this time.
While we applaud the efforts of our Members of Congress for the incredible amount of care and attention put towards health care reform, it does mean that we, as supporters of the SMA Treatment Acceleration Act, are playing a different “ballgame.”
With the arrival of Congress’s month long August recess, it is more important than EVER that our Members of Congress hear our voices and turn their attention towards the SMA Treatment Acceleration Act.
Health Staff have said emphatically that it is absolutely imperative that you - friends, family and researchers - set up time to see your Senators and Congressmen at their district offices during the August break. By arranging meetings, sending emails, and making phone calls, you are setting the stage for our Members to, without hesitation, sign on as cosponsors and support this legislation when health care reform is “out the door.” We want to be at the TOP of the list of priorities when the Members begin to focus on other issues at hand.
We cannot stress enough the importance of an aggressive grassroots effort over the August recess. It really is up to you, members of the SMA community, to make your voices heard and get your Members of Congress on board as cosponsors of the SMA Treatment Acceleration Act.
You are a mighty army, as evidenced by the enormous, unprecedented success of a single-disease bill in the 110th Congress. Let us continue our efforts, ten-fold! Let’s make the 111th Congress, OUR Congress!
As always, FightSMA is here as a resource for you. Should you have any questions or concerns, or would like help setting up meetings in your district offices, our phone lines (as well as email) are always open.
Please feel free to contact me at any time:
804-515-0080
carolinegibson@fightsma.com
Thank you all for everything that you do. We are continually inspired by your heart, dedication, and determination in fighting the good fight.
Warmly,
Caroline Gibson
Public Affairs Coordinator
FightSMA
Tags: congress, fight sma, sma, SMA treatment acceleration act, spinal muscular atrophy
People frequently ask, “What is a Fighter Mom?” Fight SMA president and Fighter Mom founder Martha Slay recently spoke with an entire room full of them, at the Rhett Syndrome Foundation’s 25th Annual Conference in Northern Virginia. She discussed the values of Fighter Moms and how to be a more effective one. In this episode of Fighting Back Podcast, we bring you the audio from her keynote address.
