2013 Advocacy Action Alert

  1. Complete the form below with your information.
  2. Review the message on the right.
  3. Click the Next Step button to send your letter to these decision makers:

  • Your Senators
  • Your Representative

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Send This Message

Thank you for passing the Paul D. Wellstone MD-CARE Act Amendments (S.315/H.R. 594)

Dear [Decision Maker],

Thank you for helping to make today a banner day in the life of a family with Duchenne muscular dystrophy. Today, you helped to transform our community's hope into reality through the passage of Paul D. Wellstone MD-CARE Act Amendments of 2014. We are eternally grateful for your support of the muscular dystrophy community.

Duchenne muscular dystrophy (DMD) is the most common, lethal, genetic disorder of childhood. It affects approximately 1 in 3,500 boys worldwide. Duchenne is a 100% fatal progressive muscle disorder, but thanks to your leadership effective treatments may soon be a part of the Duchenne landscape.

The MD-CARE Act has transformed life for Americans impacted by many forms of Muscular Dystrophy.

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The MD-CARE Act (first passed in 2001 and reauthorized in 2008) has reshaped the landscape:

*The average lifespan of a person with Duchenne has increased by 10 years over the same period of time;
*More than $250 million have been committed to Duchenne research and innovation activities, spurring a non-governmental investment of several billion dollars in potential therapies.
*Nearly 20 potential therapies are currently in clinical testing with several others in earlier stages of development.

Thank YOU.

Thank you for your support and co-sponsorship of the MD-CARE Amendments of 2014, and for helping us to ensure that the current statute continues to reflect the needs of today's Duchenne community; keeping pace with the scientific innovation and clinical progress that has yielded from our investments over the last 14 years.

We are especially extremely grateful to our sponsors and long-time champions, in the U.S. House of Representatives, Dr. Michael Burgess (R-TX) and Rep. Elliot Engel (D-NY) and in the U.S. Senate, Senators Wicker and Klobuchar. Their leadership is unparalleled and their staffs are extraordinary.

The MD-CARE Act of 2014 helps to ensure more tomorrows for our community. You have re-shaped the Duchenne story. Thank you.

Sincerely,

[Your Name]
[Your Address]
[City, State ZIP]
[Your Email]

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