SMA News from Capitol Hill

Update: The NPRNA Is Moving Forward and We Need Your Help!

FightSMA continues to press for enactment of S.424/H.R.225, the National Pediatric Research Network Act (NPRNA), bipartisan legislation to support collaborative pediatric research including multi-site clinical trials for rare pediatric disorders like SMA. Now that the bill has passed the U.S. House of Representatives, we are working with our Senate sponsors, Senators Sherrod Brown (D-OH) and [...]

National Pediatric Research Network Act Reintroduced in the Senate

In a major step forward for the advancement of clinical research for SMA and other pediatric disorders, the National Pediatric Research Network Act (NPRNA), was reintroduced today in the U.S. Senate. The legislation’s introduction comes just weeks after a bipartisan companion bill (H.R.225) passed the House of Representatives by an overwhelming margin. Introducing the NPRNA [...]

Today is International Rare Disease Day

Rallying around the slogan “Rare Disorders without Borders,” individuals around the world today are marking International Rare Disease Day.  Activities are taking place across Europe, Asia, Australia and New Zealand, and North America. There are more than 6,000 rare diseases, including Spinal Muscular Atrophy, affecting more than 60 million people in Europe and the US [...]

What is the NPRNA?

The National Pediatric Research Network Act (NPRNA) of 2013 is expected to be introduced in the U.S. Senate in the coming weeks, but many still don’t know why it’s such a big deal for the Spinal Muscular Atrophy Community. Simply put, the NPRNA promises to directly benefit the fight against SMA by supporting collaborative pediatric research [...]

FightSMA Thanks Sponsors After Passage of the National Pediatric Research Network Act (NPRNA) by the U.S. House

The following release was published by FightSMA on February 5, 2013: ALEXANDRIA, VA (February 5, 2013) – FightSMA, an international non-profit organization working toward a treatment or cure for spinal muscular atrophy (SMA), is thanking and congratulating the champions of a bill that gives hope to families across the country. The National Pediatric Research Network Act [...]