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NPRNA Signed Into Law By Obama. We Reflect On Our Personal Journey With SMA Legislation.

December 04, 2013 by Victoria Strong

Last Wednesday, the day before Thanksgiving, the National Pediatric Research Network Act (NPRNA) was officially signed into law by President Obama. That's right. The NPRNA was SIGNED! 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. (Read press release HERE.)

This is a momentous milestone for all pediatric diseases -- and specifically pediatric rare conditions. It is also a major cause for celebration for the inspiring SMA community whose tireless advocacy and relentless passion, led by FightSMA over many years, made this bill's passage possible. And, for us personally, passage of this legislation feels like a triumph that has come full circle to the beginning of our SMA journey.

For the last six years, we have been intimately involved with SMA legislation and advocacy on Capitol Hill. When Gwendolyn was diagnosed with SMA in early 2008, our world was turned completely on its head. She spent the first seven months of her life in and out of the hospital, all of us facing the unimaginable. We were overwhelmed, heartbroken, and powerless. Research was on the horizon but there was nothing we could immediately explore. It was during that time that we got involved with SMA legislation.

At that time in 2008, the SMA bill making its way through the political process was the SMA Treatment Acceleration Act. A lot of progress had been made, but it had stalled. Bill and I wrote our letters of support and called our legislators but with family and friends spread all around the country we knew there had to be a way to have a greater impact. We searched for a cohesive movement but there was none apart from submitting letters.

So on July 12, 2008 we created PetitionToCureSMA.com -- an online petition aimed at garnering broad national support for SMA legislation and increased SMA research funding on a national level. In less than a week after launching the petition, over 2,500 signatures were collected. In 10 days that hit 10,000. Our family and friends emailed the petition to everyone they knew, set up booths to collect signatures, and completely rallied around us and this effort. The press got involved. The SMA community did the same. With the help of a good friend we then created a unique (at that time) Twitter viral campaign, Tweet For A Cure. And soon the positive energy behind PetitionToCureSMA.com exploded to 50,000 signers and finally our goal of 100,000 unique signatures from all over the country representing every single state and every single Congressional district.

When we created the petition the purpose was not just to establish an easy way for people to show support. Our goal was also to prove to those on Capitol Hill, who had likely not heard of SMA, that their own constituents believed in this cause. We created a database to sort the signatures into useable data -- giving us the ability to target specific geographic areas, Congresspeople, and/or districts. FightSMA was the organization who really understood the value and unique power of our petition data and helped us hone in on how to make it even more effective. During their regular visits on Capitol Hill, or when an SMA family visited their local Congressperson, they could now take with them a detailed list of signers that the specific legislator cared about -- their constituents. Suddenly legislators were paying closer attention.

SMA legislation has taken on various forms over the last six years. FightSMA has been an incredible leader on this front -- never wavering from their passion. Under their guidance, many families have had an enormous impact on keeping SMA on the forefront of their representatives and senators minds, meeting with them, telling their SMA story, and leaving a memorable impression at the highest level in Congress. And many legislators have become champions of the SMA cause, including our own Representative Lois Capps. When the SMA Treatment Acceleration Act failed, it was Capps and her staff who helped forge a new path for an SMA bill. And it is because of her dedication and ability to work alongside her colleagues and across the aisle that the NPRNA took its current shape. SMA legislation has been close many times, but until last week when President Obama signed the NPRNA into law it never made it all the way through.

All those years ago, while still trying to process the SMA diagnosis and make sense of our new chaotic world, it felt really good to be involved, be proactive, channel energy in a worthwhile way. Doing something that was making a real difference also did something else -- it gave us a sense of purpose. And, perhaps, it saved us. It really was that initial step of believing we could do something positive by getting involved with SMA legislation that became the catalyst for establishing the Gwendolyn Strong Foundation. If pouring our energy into those initial efforts hadn't felt good to us, or if we hadn't received such enormous support, or if we hadn't built constructive relationships with the national SMA nonprofits, our journey with SMA may have taken a very different route. We would likely not be doing what we are doing today with our work with theGSF. And, personally, we may have never been able to find a place of peace and fulfillment in living with this brutal disease.

We are very proud to have been part of this positive progress. NEVER GIVE UP. takes on different meaning for everyone. And it often has multiple manifestations to each of us. Today, we are feeling a sense of strength in never giving up on the political process and the belief that SMA deserved a larger national platform. We hope you -- in having signed PetitionToCureSMA.com years ago, in having contacted your legislators (multiple times), in being involved in this process -- feel the same sense of triumph. WE DID IT. Together, we did it!  

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