2009 Advocacy Action Alert

  1. Review the message on the right.
  2. Complete the form below with your information.
  3. Click the Send Message button to send your letter to these decision makers:
    • Your Senators
    • Your Representative

* = Required Fields

*

*

*

*


*

*

*

*

*


Send This Message

Duchenne muscular dystrophy affecting your constituents

Dear [Decision Maker],

The Duchenne muscular dystrophy community urges you to support increased funding for research at NIH and for education activities at the CDC.


Duchenne muscular dystrophy (DMD) is the most common, lethal, genetic disorder of childhood. It affects approximately 1 in 3,500 boys worldwide. Duchenne knows no boundaries and affects all cultures and races. Duchenne is a progressive muscle disorder for which there is currently no treatment or cure.


Parent Project Muscular Dystrophy has been leading the Duchenne and Becker community in research and public health agenda on Capitol Hill for more than a decade, and played an integral role in helping pass the Muscular Dystrophy Community Assistance, Research and Education Act of 2001 (the MD-CARE Act, P.L. 107-84) and its reauthorization last year (P.L. 110-361).


The MD-CARE Act specified a number of provisions for expanding and intensifying research on muscular dystrophy, including that the National Institutes of Health (NIH) establish Centers of Excellence, that the Secretary of Health and Human Services (HHS) establish a Muscular Dystrophy Coordinating Committee (MDCC), that the MDCC develop a plan for conducting and supporting research and education on muscular dystrophy and that the Centers for Disease Control and Prevention (CDC) expand epidemiological activities regarding muscular dystrophy.


To ensure this progress continues, I am requesting that you co-sign a multi-member letter being circulated in Congress. In the U.S. Senate, the letter is being led by Senators Sherrod Brown and Roger Wicker. In the U.S. House the letter is being led by Representatives Doris Matsui and Michael Arcuri. This funding builds on the past actions by Congress and will emphasize translating science into action, ensure the CDC collects data on muscular dystrophy patients, and create standards of care for patients with MD.


Thank you so much for your consideration. My family, my friends and boys and young men everywhere appreciate you taking a moment to learn about Duchenne muscular dystrophy. With your support, there will be increased funding that will make a difference in the lives of all boys and their families living with Duchenne. If you have any questions, please do not hesitate to contact me.

Sincerely,

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

   Please leave this field empty