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Duchenne Community Knows No Bounds

Today – September 18, 2014, our Duchenne community once again made history by demonstrating that nothing could stop us from ensuring that the life-saving research momentum of our landmark bill would be expanded to reflect the current needs of our community. And, today the Paul D. Wellstone MD-CARE Act Amendments of 2014 (HR 594/ S 315) passed!

We did it!

The MD-CARE Act has been a game-changer for the Duchenne community. Prior to original enactment in 2000, the federal funding level for the muscular dystrophies was $17 million. Today, $75 million is directed to muscular dystrophy research with billions more in pharmaceutical industry and private investments.

But what does that really mean? That means that – in the last 14 years – we have put Duchenne research on the map in a prominent way, incentivized clinical trials that are now beginning to yield therapies that hold promise for people living with Duchenne, and fostered collaborations dedicated to optimizing the quality of life for all members of our community.

Led by our extraordinary champions Senators Roger Wicker (R-MS), Amy Klobuchar (D-MN), and Representatives Eliot Engel (D-NY), Michael Burgess (R-TX), and united with our coalition partners and our unparalleled grassroots efforts, we have reshaped the muscular dystrophy landscape. You have reshaped the muscular dystrophy landscape!

Please take a minute to thank your Members of Congress who supported this landmark legislation. Click here for everything you need to send a simple message of thanks.

Today we have shown, once again, that our Duchenne community is a force to be reckoned with. Strength Happens Together!

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Comment by john replogle on September 20, 2014 at 1:07am
This is amazing!!..im in tears with joy to see this!..gives me hope for my son George Replogle and millions of children suffering from this illness!..
Comment by Rachel Sedacca-Replogle on September 20, 2014 at 12:36am
This is excellent news! A big hug and a heartfelt thanks to everyone whose efforts made this happen! This is progress towards a cure and quality of lige for our boys. Let's put thus in the past with Polio where it belongs!

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