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Newborn Screening for Duchenne: PPMD’s Collaborative Future Planning Efforts

On Saturday, June 8th, PPMD convened a vital meeting of physicians, physical therapists, genetic counselors, data scientists, and other key opinion leaders to discuss the development of data infrastructure and care planning for newborns that…

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Congress Passes FAA Reauthorization Featuring Monumental Accessibility Improvements

This week marked a significant milestone as Congress successfully passed the bipartisan Federal Aviation Administration (FAA) reauthorization, officially known as HR 3935, the Securing Growth and Robust Leadership in American Aviation Act. This legislation, now…

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Updates from the ACHDNC Meeting and Next Steps for Duchenne Newborn Screening

Members of the PPMD community provided testimony today during the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) quarterly meeting, voicing support for adding Duchenne to the Recommended Uniform Screening Panel (RUSP) for…

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WATCH: Community Progress in Duchenne Newborn Screening (Webinar Recording)

PPMD, in collaboration with the Muscular Dystrophy Association (MDA), the EveryLife Foundation for Rare Diseases, and the Little Hercules Foundation (LHF), recently hosted a webinar on the background, history, and next steps for Duchenne Newborn…

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Ohio to Begin Screening Newborns for Duchenne

PPMD is excited to announce another significant milestone in Duchenne newborn screening: Ohio will be the first state to screen all babies for Duchenne! More than 129,000 babies are born in Ohio every year, and…

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PPMD Launches First State-Specific Duchenne Advocacy Day in Illinois

PPMD is proud to announce the launch of our first state-specific Duchenne Advocacy Day in Illinois! This initiative marks a significant milestone in PPMD’s efforts to advance legislative progress for Duchenne at the state level….

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60+ Experts Unite to Author Consensus Statement Championing Duchenne Newborn Screening

Over 60 leading experts in genetics, pediatrics, neurology, and public health advocates have authored a consensus statement in support of implementing Duchenne newborn screening. Key points of the consensus statement include: Timely Intervention: Early screening…

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Fiscal Year 2024 Appropriations Package Signed Into Law, Including Critical Funding for Duchenne and Becker

At the beginning of March, PPMD’s Advocacy Conference brought together more than 120 advocates from 26 different states in Washington, D.C. to advocate on behalf of the Duchenne and Becker community. This past weekend, the…

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PPMD’s 2024 Advocacy Conference Brings Together Community to Support Progress in Fighting for Every Future

Earlier this month, more than 120 PPMD advocates – people with Duchenne and Becker, parents, siblings, grandparents, and other family members and friends – from 26 different states gathered in Washington, D.C. to urge legislators…

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PPMD Hosts Town Hall on Clinical Trials During 2024 Advocacy Conference

The PPMD Town Hall on Clinical Trials, taking place on Monday, March 4th during PPMD’s 2024 Advocacy Conference in Washington, D.C., aims to provide a platform for families affected by Duchenne and Becker to share…

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