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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November 3, 2020

PPMD Urges Congress To Make It Easier for Providers To Treat Children From Other State Medicaid Programs

PPMD joined 22 prominent Organizations and Institutions in a letter urging Congress to enact the Accelerating Kids’ Access to Care Act (H.R. 5900 and S. 4717) by the end of the current Congress. This bipartisan…

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October 30, 2020

Calling All Adults with Duchenne & Becker: Join the 2021 PPMD Adult Advisory Committee!

Been looking for a way to engage with the community a bit more? Have a personal experience that you would like to share with the larger community or federal and state advocacy efforts? Interested in…

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September 14, 2020

Resilience Is Strength: Thank You for Fueling Our Fight to End Duchenne

As we celebrate the resiliency of our community this week as part of Duchenne Action Month, I have been reflecting upon all that we continue to accomplish, even in this time that is anything but…

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August 20, 2020

PPMD’s Duchenne Newborn Screening Pilot in the Spotlight

PPMD’s Newborn Screening Pilot was recently highlighted at the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) meeting. The ACHDNC advises the US Department of Health and Human Services Secretary about which conditions…

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August 13, 2020

2020 #PPMDConference Presentations

2020 PPMD Annual Conference Presentations JULY 22 – JULY 25, 2020 | Virtual Conference PPMD’s first Virtual Annual Conference was incredible with nearly 2500 families, care providers, researchers, scientists, and industry partners joining us for…

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