Advocacy

When Parent Project Muscular Dystrophy started in 1994, we knew that one of our first priorities was to travel to Washington, D.C. to give a voice to the thousands of families affected by Duchenne. We had to educate our nation’s leaders to get the federal support needed to make real progress in research and care. Today, we continue to educate our nation’s leaders. We provide advocates with the tools and information they need to advance legislation and regulatory efforts that will impact their lives and ensure Duchenne is a priority across all government agencies. Our advocacy efforts are focused on advancing the research that will lead to treatments and, ultimately, an end to Duchenne.

In this section, we share PPMD’s advocacy history, outline our legislative and regulatory goals, help you navigate the complicated path to access of approved therapies, and explore how you and your family can become Duchenne advocates, raising your voice in our nation’s capital to affect real change for generations to come.

Our Impact

Become a PPMD Advocate

Join the PPMD Advocate network and learn how to get involved with Duchenne advocacy. By signing up to be a PPMD Advocate, you will receive emails throughout the year about how you can take action through online action alerts right from home, as well as hear about opportunities to advocate in person with your elected officials.

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