Parent Project Muscular Dystrophy Continues Public Policy Advocacy

United States - District of Columbia

Parent Project Muscular Dystrophy (PPMD) is a nonprofit organization that fights to end Duchenne and Becker muscular dystrophy (MD). Our firm is proud to have been, and continues to be, a longstanding partner with PPMD for over two decades as their federal policy representative on Capitol Hill and with federal agencies. Over the decades, PPMD’s public policy successes have transformed the federal landscape regarding MD research, therapy development, and quality care. The legislative accomplishments include:

  • Muscular Dystrophy Community Assistance Research and Education (MD CARE) Act of 2001. Our firm is proud to have assisted in writing the MD CARE Act. Faegre Drinker has successfully advocated for extension and expansion of the original law, as well as funding to implement it. Since the bill was signed, the federal government has invested over $600 million in MD research.
  • 21st Century Cures Act of 2016. Our firm worked to ensure that PPMD’s interests in patient-focused drug development were reflected in the landmark 21st Century Cures Act. Over a period of three years, we worked to understand PPMD’s priorities, helped write them into the legislation and advocated for the passage of the final sweeping legislation.
  • Increase in CDC Budget for Duchenne. Each year, our firm assists PPMD in advocating for federal funding for research and care for Duchenne muscular dystrophy. In 2022, Congress increased the CDC budget for Duchenne by $1 million from $6.5 to $7.5 million. In addition, Department of Defense Congressionally Directed Medical Research Program funding remained level at $10 million. 

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