February 25, 2021

Senate Duchenne Champions Reintroduce BENEFIT Act Heading into PPMD’s Virtual Advocacy Conference

When people think of dynamic duos and classic pairings, they probably think of Batman and Robin, Fred and Ginger, or Oreos and milk. For those of us in the Duchenne and rare disease community, we…

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February 16, 2021

Save the Date for PPMD’s Annual Conference: Virtual Edition – June 23-26, 2021

PPMD’s Annual Conference – Virtual Edition June 23-26, 2021 It’s hard to believe that we are still in this pandemic. We are getting closer to safer days ahead and we want our Duchenne and Becker…

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February 12, 2021

Meet the 2021 PPMD Adult Advisory Committee (PAAC)

PPMD is thrilled to announce the members of the 2021 PPMD Adult Advisory Committee (PAAC)! PAAC members serve at a leadership capacity to represent the teen and adult Duchenne and Becker community. Despite the inability…

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February 3, 2021

TODAY: Virtual Town Hall at 1 PM EST

Advocacy in Action: Virtual Town Hall Facebook Live | February 3, 2021 To commemorate the passage of the MD-CARE Act, PPMD will host a Virtual Town Hall on Wednesday, February 3, 1 PM – 4…

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January 29, 2021

20 Years of the MD-CARE Act: Commemorating Progress & Charting the Future Course

On February 27, 2001, 20 years ago, the Duchenne community gathered in Washington, DC for the first ever Senate hearing focused on Duchenne muscular dystrophy. On that much-anticipated day, a young teenager, Ben Cumbo, Goodwill…

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January 25, 2021

PPMD Joins Letter Supporting the Appointment of Dr. Janet Woodcock as Acting Commissioner of the FDA

PPMD joins 81 other patient organizations in a letter led by The Everylife Foundation for Rare Diseases to the Biden Administration applauding the appointment of Dr. Janet Woodcock for the position of Acting Commissioner of…

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January 12, 2021

Join PPMD’s 20th Anniversary of Advocacy in Action

2021 marks the 20th Anniversary of the MD-CARE Act, landmark legislation that launched coordinated federal efforts to confront Duchenne and Becker muscular dystrophy through research, public health, and quality care initiatives. This congressionally directed federal…

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December 28, 2020

PPMD Advocates Secure Critical Congressional Funding for Duchenne Priorities in Year-End Package

Thanks to your advocacy at our annual spring Advocacy Conference supporting congressional funding of Duchenne research and care priorities, Congress has continued to fund federal agencies for this work and the President has signed off…

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December 16, 2020

PPMD Joins Letter Urging Inclusion of Neuromuscular Disease Community in Early COVID-19 Vaccine Distribution

PPMD is proud to have joined 20 patient organizations in signing letters led by the MDA to states and jurisdictions urging the inclusion of people living with neuromuscular diseases, such as Duchenne and Becker muscular…

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November 10, 2020

PPMD’s Ground-Breaking Effort: An Update After One Year of Our Newborn Screening Pilot for Duchenne

14,000 Babies Tested in Partnership with New York State and NBSTRN; Data Presented at Association of Public Health Laboratories Newborn Screening Virtual Symposium Parent Project Muscular Dystrophy (PPMD) today announced that our Newborn Screening Pilot…

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