On Monday, January 28, 2013, U.S. Senator Sherrod Brown (D-OH) announced at Nationwide Children’s Hospital in Ohio that he is once again teaming up with Senator Roger Wicker (R-MS) to advance the National Pediatric Research Network Act (NPRNA). Joining Sen. Brown at the event were Carl, Annette, and Madison Reed of Dublin, Ohio, and founders of Miracle for Madison and Friends, which has helped raise more than $1 million for SMA research. The Reeds are longtime friends and partners of FightSMA .
The NPRNA would create a network of research consortia throughout the nation that will share breakthroughs in order to find treatments for SMA and dozens of other rare pediatric diseases. Sens. Brown and Wicker are expected to introduce an updated version of the NPRNA in the coming weeks. The House Energy and Commerce committee passed its own version of the NPRNA with broad bipartisan support on January 22nd. The full House is expected to pass the legislation, sponsored by Reps. Lois Capps (D-CA) and Cathy McMorris Rodgers (R-WA), as soon as early February.
FightSMA is grateful to the Reeds for their tireless efforts and Sens. Brown and Wicker for coming together in an effort to pass this critical legislation.
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I’m curious to know if fights a has thought about taking some of the funds to help us families in the hospital having financial issues while outta work. I am my son Cody maline’s CNA so while in the hospital. We are struggling, although I’m thankful for research I think if a portion went to daily living expenses, equipment, medical bills it would help us parents keep up with faith and hope. Thank you
Patty Johnson
Codywantstohunt@gmail.com