annual conference

August 13, 2024

Finding Support to Manage Behaviors in Duchenne and Becker

Research has shown that dystrophin is usually present in the brain as well as in the muscles. Scientists believe that when dystrophin is missing or partially functional, like in Duchenne and Becker, brain neurons may…

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Your Citizen Science At Work

By sharing your anonymous data through The Duchenne Registry, you are strengthening the power of a 15-year-old network of patient-powered data that is used to improve care for people living with Duchenne and increase our…

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Clinical Trials & Outcome Measures in Duchenne

Clinical trials and research studies are vitally important to improving health and quality of life for people with Duchenne and Becker. Research is always advancing and evolving, and outcome measures fall into this category, as…

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Finding Belonging and Fostering Community

While no one asks to be part of this community, and entering the world of Duchenne and Becker can be overwhelming, you are not alone. During his keynote session at PPMD’s 30th Annual Conference, Brandon…

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Making it Work: Practical Tips for Enhancing Quality of Life

It’s important to ensure that even within the context of Duchenne/Becker, kids are doing things that kids should be doing, adults are doing things that adults should be doing, and families can lead the lives…

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Navigating the Approved Therapy Landscape

The approved therapy landscape has changed drastically in Duchenne, especially over the last year. With multiple newly approved therapies comes a lot of questions about how to navigate these drugs: when they are prescribed; who…

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PPMD’s 30th Annual Conference Session Recordings

Thank you to everyone who helped us celebrate three decades of progress, community, and resilience at PPMD’s 30th Annual Conference, whether you joined us in person in Orlando, or tuned in virtually! PPMD’s 30th Annual…

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Build Your Own Care Binder at PPMD’s 30th Annual Conference

PPMD is excited to share that at our 30th Annual Conference, taking place June 27-29, 2024, in Orlando, Florida, the PPMD Care team will host a “DIY Care Binder” station where families can create a…

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Join Us in Orlando for PPMD’s 30th Annual Conference

Celebrate three decades of progress, community, and resilience at PPMD’s 30th Annual Conference, June 27–29, 2024 in Orlando, Florida! Back in 1994, our very first Conference was held in Orlando, and now, 30 years later,…

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Catch up on what’s happening at PPMD’s 2023 Annual Conference: Day 3

The third and final day of PPMD’s 2023 Annual Conference kicked off with the much-anticipated Gene Therapy Town Hall. Buddy Cassidy opened the session by sharing his experience as a Patient Representative for the May…

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