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 Representative

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Send This Message

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

Dear [Decision Maker],

The Duchenne muscular dystrophy community thanks you for passing the Paul D. Wellstone MD-CARE Act (H.R. 594). We hope you will encourage the Senate to act this September to finish the job you started.

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 again in 2008):

*The lifespan of the average patient 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 in clinical testing with several others in earlier stages of development.

We are extremely grateful to Rep. Michael Burgess (R-TX) and Rep. Elliot Engel (D-NY) for their leadership. As our bill sponsors, they have been champions for the muscular dystrophy community. Their staff deserves so much credit as well for working to ensure the bill made it through committee and to the floor for a vote.

The Senate HELP committee approved their version S.315 in late July - we are now awaiting action by the full Senate.

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We ask you to please urge your Senate colleagues to take up the legislation when they return in September.

Please encourage those Senators you are close with to make this bill a priority and vote yes when it comes to the floor. Lives are at stake. This bipartisan bill does so much to impact millions of lives.

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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