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Our Advocacy History

Perhaps no other voluntary health organization has come so far and so fast in the realm of Congressional advocacy than Parent Project Muscular Dystrophy (PPMD). We are singularly focused on efforts to advance research that will lead to treatments, and ultimately a cure, for Duchenne and Becker muscular dystrophy. Our constituents and leading advocates are YOU — the patients, and the families and friends of those affected by Duchenne. 

Early on in our fight, we realized that the greatest source of advancements in basic science is through the National Institutes of Health (NIH), which is funded by the federal government and overseen by Congress. In 2000, when PPMD began actively advocating in an organized manner, we scored a major success when language requiring NIH to increase its investment and coordination of research into muscular dystrophy became law.

In 2000, the NIH held a scientific workshop on Duchenne, bringing together scientists from all over the world to advance the cause. This was the first Duchenne-specific workshop since the dystrophin gene was identified 14 years earlier. This workshop—thanks to PPMD's advocacy efforts—was a direct result of strong report language that members of Congress included on PPMD's behalf in a spending bill that funds the NIH. 

Just one year later in December 2001, PPMD achieved another stirring victory when the MD-CARE Act was signed into law. Sponsored by Congressman Roger Wicker of Mississippi and the late Senator Paul Wellstone of Minnesota, this bipartisan legislation was cosponsored by 310 members of the House of Representatives—more than 70% of the entire House. It is also the only condition-specific legislation to become law in recent years. To date, this bill has dramatically increased NIH's investment into muscular dystrophy research, including the funding of six Centers of Excellence. 

The bill was successfully reauthorized in 2008 keeping the momentum going and keeping Duchenne on the radar of Congress and the NIH. Also in 2008, with the help of PPMD and its partners, Standards of Care were finally published through the Centers for Disease Control.

We need to continue our efforts in the halls of Congress if we are to change the course of Duchenne for this generation of children. 

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