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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Support the Paul D. Wellstone MD Care Amendments

Dear [Decision Maker],

The Duchenne muscular dystrophy community urges you to co-sponsor the Paul D. Wellstone MD-CARE Act Reauthorization.

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 progressive muscle disorder for which there is currently no treatment or cure.

The MD CARE Act has transformed life for Americans impacted by many forms of Muscular Dystrophy. Because of the MD CARE Act (first passed in 2001) and its 2008 Reauthorization:

The lifespan of the average patient with Duchenne has increased by 10 years over the same period of time;
More than $200 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 in clinical testing with several others in earlier stages of development.

I am requesting that you co-sponsor the Paul D. Wellstone MD-CARE Act reauthorization.

The reauthorization bill was introduced in the House as H.R. 594 by Rep. Michael Burgess (R-TX) and Rep. Engel (D-NY) and introduced in the Senate by Sen. Amy Klobuchar (D-MN) and Sen. Roger Wicker (R-MS) in February 2013. The Paul D. Wellstone MD CARE Act Amendments builds on the success of the original authorizations. This is not a disease specific bill, rather, it covers 9 forms of muscular dystrophy. This bill has extended the lives of patients by 10 years in some cases.

This reauthorization has the overwhelming support of the MD community, and is being led by The Parent Project Muscular Dystrophy (PPMD), The Muscular Dystrophy Association (MDA) and The Foundation to Eradicate Duchenne (FED).

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Thank you so much for your consideration. To cosponsor this bill please contact either Jayme Fuglesten with Sen. Klobuchar or Sarah Lloyd Allred with Sen. Wicker in the Senate or James "JP" Paluskiewicz with Rep. Burgess or Heidi Ross with Rep. Eliot Engel in the House.

All family and friends of those living with Duchenne Muscular Dystrophy appreciate you taking a moment to learn about this disease. With your co-sponsorship, you will lend yet another voice in Congress to making sure this reauthorization bill becomes law. If you have any questions, please do not hesitate to contact me.


Sincerely,

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

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