National Pediatric Research Network Act Takes Another Big Step

FightSMA’s legislative efforts in Washington have taken another important step forward. Senate Bill 3461, the Senate companion to the House of Representatives’ National Pediatric Research Network Act (H.R. 6163), was introduced last evening by Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS). Like the House version introduced July 19, the Senate bill directs the National Institutes of Health to support the formation of pediatric research consortia and calls for a number of these consortia to focus on conducting multisite clinical trials and translational research on rare pediatric disorders, with a specific mention of SMA.

The effort to build support for the bill is underway, with Senators John Kerry (D-MA), Mark Begich (D-AK), Sheldon Whitehouse (D-RI) and Richard Blumenthal (D-CT) already signing on as cosponsors. FightSMA will be working throughout the August congressional recess with members and staff of the Senate Committee on Health, Education, Labor and Pensions (HELP) to press for committee consideration of the bill and seek additional cosponsorship. Similarly, we will continue our legislative push in the House alongside our two sponsors, Reps. Cathy McMorris-Rodgers (R-WA) and Lois Capps (D-CA).

- FightSMA press release dated August 1, 2012.