Getty Owl Foundation

California – Quick Action to Cure!

Hey, California! Helping cure Spinal Muscular Atrophy (SMA) is a easy as copy, paste, fill, and send! Contact our senators with the email addresses and letter below. Thanks!

Click here to email Barbara Boxer

Click here to email Dianne Feinstein

Dear Senators Barbara Boxer and Dianne Feinstein:

On behalf of families like mine across California who are working to find a treatment for spinal muscular atrophy (SMA), I write to urge you to cosponsor the National Pediatric Research Network Act (S.3461 / H.R. 6163). The House of Representatives passed this important legislation with broad bi-partisan support on September 19th thanks to the leadership of Reps. McMorris Rodgers (WA) and Capps (CA). NPRNA will benefit a broad array of pediatric diseases by promoting cooperation among multiple institutions and advancing the development of new therapies while making more efficient use of scarce research dollars.

SMA is the leading genetic killer of children under the age of two. It destroys motor neurons, which regulate voluntary muscle movements such as crawling, walking, head and neck control, swallowing and breathing. Research funding for this devastating disease over the past two decades has primarily come from private organizations, bringing several life-changing therapies to the doorstep of the clinic. To address the significant challenges of implementing national clinical trials for SMA, and so many other diseases, a bipartisan group of senators, led by Sherrod Brown (D-OH) and Roger Wicker (R-MS), developed the NPRNA. We are proud that our list of cosponsors continues to grow and now includes Senators Grassley (IA), Blunt (MO), Whitehouse (RI), Begich (AK), Blumenthal (CT), and Kerry (MA).

This bill would strengthen the federal investment in pediatric research by supporting infrastructure and core services needed to support translational and clinical research for a broad array of rare pediatric disorders, such as SMA, Down Syndrome, and Duchenne Muscular Dystrophy. The NPRNA would authorize NIH to establish up to 20 pediatric research consortia throughout the nation which will be required to communicate regularly with one another in order to promote collaboration and resource sharing.

We have made tremendous progress in advancing this legislation. As the bill comes before the Senate, your cosponsorship of this bill would mean the world to families like mine across California. Thank you so much for your consideration.