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Help us Reauthorize the MD-CARE Act 

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How to Get Active in Advocacy

We need your voice.

2013 is shaping up to be an important year in Duchenne Advocacy. We are determined to educate representatives in every district and Senators in every state about why it is so important that they reauthorize the MD-CARE Act in 2013.  Over the past 11 years, the MD-CARE Act has played a vital role in advancing research and improving the care for all those diagnosed with Duchenne. Since 2001, nearly $500 million dollars has been invested by the federal government in research, care considerations have been established and published, and outlook for all those affected by Duchenne is changing.  As we enter into a new era in Duchenne's history, with clinical trials coming to fruition and the hope for a treatment for this generation, we MUST continue the momentum started by a small group of families in 2001 with the birth of the MD-CARE Act. We MUST reauthorize this bill. 

The 50 State Challenge

Duchenne touches far too many people in this country. Our representatives need to know that Duchenne is important in THEIR district to THEIR constituent. Our Senators need to know that it matters in THEIR state. So it is our goal this year to have supporters identified for this effort for every one of the 535 offices in Congress.

We know that advocating and telling your story can seem intimidating, but we are here to make the journey as easy as possible. Below are ways you can get active. We ask you to invite your families, neighbors, care givers, friends - anyone who cares about you and your children. 

  1. Register for the 2013 Advocacy Conference in Washington February 10-13, 2013

    Join us in Washington, DC!We need the support of the entire community to make our voices heard. It is critical that we pass the MD-CARE Act Reauthorization. Advocating in D.C., in person, makes the largest impact. We need to cover as many states as possible.

  2. Add your name to our packet drop off

    Add Your Name!If you are unable to make the trip to D.C., make sure your voice is still represented by adding your name to the information packets the Advocates will be discussing and leaving at each Congressional office. These packets are incredibly affective tools. Invite your relatives, friends, people who care about you and your family, anyone who believes in our mission to end Duchenne to do the same! This year we have created separate surveys for families and friends. 

  3. Call or email your members of Congress

    Contact Your Reps!While advocates are on the Hill participating in meetings in February, we will be asking all those who can't make the conference to send emails and make phone calls to reinforce our message. This can be with just a few easy clicks or five minutes on the phone. 

    We give you the tools to make it as easy as possible, by providing the call script and email template for you. All you have to do is add your personal story.

  4. Spread the word!

    Advocacy Spread the WordHelp spread the word on this initiative. Ask your Facebook friends, your email list, your friends, family, coworkers, classmates & neighbors - anyone who wants to "Change the Outcome" of Duchenne Muscular Dystrophy, to come to this page and support our effort.

    Just click the Share button below!

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Please don't hesitate to contact PPMD with any questions you have about advocating. We hope you will consider lending your voice to ours. No one can do everything, but everyone can do something!

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Our family-centered approach is at the heart of everything we do. Learn more.