Dear Friends in the Fight!

We are thrilled with the passage of the NPRNA in the House of Representatives! Many thanks for all that you have done to make this happen. Now — on to the Senate and from there to desk of the President of the United States!

Please help us build this critical support in the Senate by writing your Senator through their website and also phoning the Capitol Hill office. You can copy and paste the draft letter below for email or fax.  We’ve also listed talking points.

For contact information for your Senator’s office, visit  When you write or call, we strongly encourage you to mention your family’s story and experience with SMA.

Thank you so very much!

Yours in the fight,

Martha Slay

(Letter to be sent via Senator’s website)

Dear Senator ____________,

Here in [STATE], I’ve had the privilege to be involved with FightSMA, a non-profit organization of families in our state and across the country working to find a treatment for spinal muscular atrophy (SMA), the leading genetic killer of children under two. Along with millions of other families living with rare pediatric diseases, I am proud to support S.424, the National Pediatric Research Network Act (NPRNA). I write you today to ask for your support in passing this critical legislation, which will accelerate the development of treatments for devastating pediatric diseases by encouraging collaboration and sharing of resources across multiple research institutions, making more efficient use of scarce federal funding.

The NPRNA passed the U.S. House of Representatives on February 4, 2013 and was introduced in the U.S. Senate by Senators Roger Wicker (R-MS) and Sherrod Brown (D-OH). The bipartisan coalition of cosponsors includes Senators Orrin Hatch (R-UT), Johnny Isakson (R-GA), Sheldon Whitehouse (D-RI), Roy Blunt (R-MO), Susan Collins (R-ME), Rob Portman (R-OH) and Richard Blumenthal (D-CT).

My family and others in [STATE] would greatly appreciate your cosponsorship and your help in securing a markup of the bill in the Senate HELP committee.

For more information on the bill, please feel free to contact Valarie Molaison in Sen. Brown’s office ( or Sarah Lloyd Allred in Sen. Wicker’s office (

Thank you very much for your consideration.  Your support would mean the world to [STATE] families, and we are ready to do whatever it takes to help move this provision across the finish line.

(Talking points for phone call)

  • I am a constituent of Senator NAME
  • I am phoning today to urge Senator NAME to cosponsor the National Pediatric Research Network Act of 2013 (S. 424/H.R. 225)
  • I am asking the Senator to please support a markup of the bill in the Senate HELP Committee.
  • This legislation will benefit SMA and other rare diseases.
  • There are nearly 7,000 rare diseases affecting 25 to 30 million people most of whom are children.
  • My family’s story and our experience with SMA is _____.
  • The Senator’s co sponsorship of NPRNA would mean the world to me and other families across STATE
  • Thank you for your consideration!