The very first thing our family did with PPMD was go to Washington DC in February 2001. It was 4 months after Michael was diagnosed with DMD. We were still in somewhat of a shocked phase not knowing what to do or where to turn. Wow, what a trip! There was virtually no federal funding for DMD research but the MD Care Act was just introduced and we were there with about 75 others to make our case. It was such an empowering feeling to be able to do SOMETHING. It filled us with hope. There are people in Washington that really do respond to the ordinary citizen and they want to help. The passing of the MD Care Act changed the research field for DMD in dramatic ways and now we have more hope. We go to DC every year to remind them that our boys still need their help. I posted 2 pics of Michael in DC on September 16th of this year. He went to DC this time too and met with Senators and Congressmen/women to make sure they saw how much boys like him needed their help. Of course, as his very proud mom, I like to think he helped get the Re-Authorization of the MD Care Act passed. It was so important for the progress that has been made to continue to build...our boys deserve the best medical research has to offer.

But it's not over. We have more work to do. We need to remain a presence so that the MD Care Act gets the funding it needs to carry out its mandates. We need to remind our representatives that our boys need them. I am all for fundraising, don’t get me wrong, but we need to be sure our boys get the attention of the federal government. How about a DMD bailout!

I am passionate about advocacy not only because it can truly have an impact on our boys lives but because it provides an avenue for parents, grandparents, aunts, uncles….to make a larger impact on DMD research than many of us thought we could.

Having a successful advocacy conference is costly for PPMD. So for the holiday appeal...support a parent project....PLEASE, HELP A GIRL OUT!!!

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Comment by Pat Furlong on December 22, 2008 at 10:07am
Dear Suzanne,
I'm sure you often hear the phrase "I don't know how you do it" coming from friends and family. To be honest, I do know how you do it. You take one look at Michael and figure out that you do not actually have a choice. So you roll up your sleeves and head to DC and it has paid off in so many ways. NIH has Duchenne on its radar screen, investing in basic research, investing in industry sponsored research, investing in clinical trials and investing in people. The community (funded by CDC) will publish Care Considerations, setting the standard for care in the US and around the world. Getting that ReAuthorization passed in the 110th Congress was and is amazing. I agree, we are not done, but the road is paved. We now have many new members of Congress coming in January. Every single new member needs to know about Duchenne and the urgent need to EndDuchenne. 2009 will be an exciting year in Washington.
Count me in!
Comment by Christine Piacentino on December 19, 2008 at 8:52am
Suzanne - Great comments! GIRL, - You got my help!!!!!

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