National Pediatric Research Network Act (NPRNA)

National Pediatric Research Network Act (NPRNA)

November 27, 2013 >> President Obama Signs the National Pediatric Research Network Act (NPRNA) Into Law

On Wednesday, November 27, 2013, the National Pediatric Research Network Act (NPRNA) was officially signed into law by President Obama. The NPRNA was approved as part of a health package known as the PREEMIE reauthorization act (S.252) and will have a powerful impact on pediatric rare diseases like SMA. Specifically, this legislation authorizes the National Institutes of Health (NIH) to create the collaborative infrastructure necessary to conduct leading-edge pediatric research today and well into the future -- from basic disease research all the way through human clinical trials. The coordination and network it will establish couldn't be coming at a more opportune time for countless complex conditions and we believe the NPRNA will prove critical to creating the environment necessary to enable the next major push forward for rare pediatric disease research and specifically research of SMA.

Click HERE to read more as we reflect on our personal journey with SMA legislation.

November 14, 2013 >> The National Pediatric Research Network Act (NPRNA) Passes U.S. Senate

After years of passionate advocacy by families across the country, the United States Senate passed the National Pediatric Research Network Act (NPRNA) by unanimous consent. The legislation, which the U.S. House approved on Tuesday night, now heads to the President’s desk for his signature. The NPRNA was approved as part of a health package known as the PREEMIE reauthorization act (S.252).

To read more, click HERE.

February 27, 2013 >> The National Pediatric Research Network Act (NPRNA) is Reintroduced in the Senate

In a major step forward for the advancement of clinical research for Spinal Muscular Atrophy (SMA) and other pediatric disorders, the National Pediatric Research Network Act (NPRNA), was reintroduced in the U.S. Senate on February 27, 2013. The legislation’s introduction comes just weeks after a bipartisan companion bill (H.R.225) passed the House of Representatives by an overwhelming margin.

To read more, click HERE.

February 4, 2013 >> NPRNA unanimously passes the House of Representatives

On February 4, 2013, the House of Representatives unanimously passed H.R. 225, the National Pediatric Research Network Act (NPRNA).

Click HERE to read more about this major milestone for SMA.

Watch this video of the testimony on the floor of the House of Representatives. Gwendolyn's story is shared by Rep. Lois Capps (D-CA) and we once again couldn't be more proud.

January 22, 2013 >> NPRNA of 2013 Passes Health Subcommittee in the House of Representatives

On January 22, 2013, the House Energy and Commerce Committee’s Health Subcommittee passed H.R. 225, the National Pediatric Research Network Act of 2013 (NPRNA). Our very own Rep. Lois Capps (D-CA) singled out spinal muscular atrophy (SMA) as one of the rare pediatric disorders for which this bill will help find a treatment.

Watch this video of the Health Subcommittee hearing in the House and hear Rep. Capps speak about Gwendolyn during the session.

January 15, 2013 >> NPRNA Re-Introduced in the United States House of Representatives

Today Congresswoman Lois Capps (CA-24) re-introduced the National Pediatric Research Network Act (H.R.225) with her Republican colleague Congresswoman Cathy McMorris Rodgers (WA-5). They were joined by a bipartisan group of four colleagues.

The National Pediatric Research Network Act (NPRNA), which passed the House unopposed in 2012, would authorize the National Institutes of Health (NIH) to facilitate the creation of pediatric research consortia focused on pediatric diseases, such as spinal muscular atrophy (SMA). The bipartisan bill was designed to help increase research and accelerate the development of clinical trials to treat rare pediatric diseases.

"As parents of a 5-year-old little girl battling spinal muscular atrophy (SMA), the leading genetic killer of young children, we're unbelievably grateful to our very own Congresswoman Lois Capps for her steadfast support of rare pediatric diseases. Research of complex and debilitating diseases, such as SMA, is extremely mature with many programs headed to human clinical trials in the near future. The timing of the re-introduction of the NPRNA couldn't be more critical and its impact could potentially be game changing for children suffering from diseases like SMA," said Bill Strong, Co-founder, Gwendolyn Strong Foundation.

To read the press release, click HERE.

September 19, 2012 >> NPRNA unanimously passes the House of Representatives

On September 19, 2012, the House of Representatives unanimously passed H.R. 6163, the National Pediatric Research Network Act (NPRNA).

Click HERE to read more about this major milestone for SMA.

Watch this video of the testimony on the floor of the House of Representatives. Gwendolyn's story is shared by Rep. Lois Capps (D-CA) and we once again couldn't be more proud.

September 11, 2012 >> NPRNA Passes Health Subcommittee in the House of Representatives

On September 11, 2012, the House Energy and Commerce Committee’s Health Subcommittee passed H.R. 6163, the National Pediatric Research Network Act (NPRNA). Speaking on the bill’s behalf, our very own Rep. Lois Capps (D-CA) singled out spinal muscular atrophy (SMA) as one of the rare pediatric disorders for which this bill will help find a treatment. Rep. Capps went on to express appreciation for the bipartisan fashion in which she was able to work with lead Republican sponsor Rep. Cathy McMorris Rodgers (R-WA), as well as Rep. Diana DeGette (D-CO), to advance this critical legislation to the full committee level.

Click HERE to read more about this major milestone for SMA.

Watch this video of the Health Subcommittee hearing in the House. Gwendolyn's name is mentioned by Rep. Lois Capps (D-CA) and we couldnt' be more proud.

August 2012 >> The United States Senate introduces a companion bill to the NPRNA in the House of Representatives

Another major 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.

To read more, click HERE.

July 2012 >> The National Pediatric Research Network Act (NPRNA) introduced in the House of Representatives

In July 2012, a bill to authorize the National Institutes of Health (NIH) to support the creation of up to 20 pediatric research consortia focused on diseases such as spinal muscular atrophy (SMA) was introduced in the U.S. House of Representatives.

The bipartisan bill, called the National Pediatric Research Network Act (NPRNA) is being introduced by Representatives Cathy McMorris Rodgers (R-WA) and Lois Capps (D-CA). It is designed in part to help achieve the goal of securing additional federal resources to accelerate clinical trials for spinal muscular atrophy (SMA).

“We are thrilled about this bill which is the result of the dedication of so many in the SMA community,” said Martha Slay, founder and immediate past president of FightSMA. “Legislation to benefit SMA is at the heart of the FightSMA mission.”

“Over the past year, FightSMA has worked with our champions in the Congress, Representatives McMorris Rodgers and Lois Capps, on this important legislation. With the support of longtime FightSMA ally House Majority Leader Eric Cantor (R-VA), these two key members of the House Energy and Commerce Committee’s Subcommittee on Health have collaborated to craft bipartisan legislation that will advance translational research and clinical trials for a variety of rare pediatric disorders, with SMA serving as a model disease,” said Ms. Slay.

“I am proud to join Rep. Capps in introducing the very important National Pediatric Research Network Act. She has been an instrumental leader in the fight to promote pediatric research for genetic disorders, especially spinal muscular atrophy and Down syndrome,” said Rep. McMorris Rodgers. “As the mother of a son with Down syndrome, I am confident this legislation will go a long way to improving the lives of those with genetic disorders. I look forward to working in a bipartisan way to make sure this bill is signed into law.”

“I am proud to co-author this legislation with my friend (Rep.) Cathy McMorris Rodgers, which would go a long way to increasing and improving research on children’s illnesses–especially rare and complex diseases–and developing new treatments to fight them,” said Congresswoman Capps. “Every parent’s worst fear is that their child becomes sick, and we owe it to all parents to do what we can to fight childhood illnesses. I would also like to thank my constituents, Bill and Victoria Strong, for their tireless work on behalf of their daughter, Gwendolyn, and all children with Spinal Muscular Atrophy and other rare diseases. Their dedication to fighting this terrible disease has been an inspiration for me and a driving force behind this bill,” said Congresswoman Capps.

Expanding on a previous pediatric research measure by Congresswoman Diana DeGette (D-CO), the bill calls for an appropriate number of new consortia to focus primarily on rare diseases, and specifically mentions SMA among the diseases that should be included. The bill directs NIH to support consortia that conduct multisite clinical trials of therapies for pediatric rare diseases.

“FightSMA and our congressional sponsors have collaborated directly with senior health staff on the House Energy and Commerce Committee in drafting this legislation,” said Mike Calise, Chair of the FightSMA Board of Directors, “and we will continue to work with them to ensure that the committee considers the bill in a timely manner.”

The process of building bipartisan support for a companion bill in the Senate has begun, working with the Senate Committee on Health, Education, Labor and Pensions (HELP). FightSMA’s objective is to have a bill introduced in the Senate as early as possible. “We will continue to push aggressively for enactment of this important legislation in 2012,” said Calise.

-- FightSMA press release dated July 20, 2012.

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