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Physical Therapy Can Make All the Difference in Duchenne
Record-Breaking Impact During World Duchenne Awareness Month Each September, World Duchenne Awareness Month shines a spotlight on the urgent needs and powerful momentum within our community. This year, CureDuchenne’s Physical and Occupational Therapy Certification Program saw unprecedented growth, confirming what we’ve long known: specialized training matters, and physical therapy can make all the difference for individuals living with Duchenne and Becker muscular…
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How the disability community benefits from having more choices
When in the course of human events, it becomes necessary to make choices, we must first consider our options. Congratulations! By reading these words, you have made a choice to crawl into my brain (terrifying) for a few moments and learn about what is currently on my mind. If you have read my column before,…
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Tips for Smooth Holiday Travel
The holidays are a special time to connect with family and friends, and for many, that involves travel. To help make your journey a little easier, PPMD has gathered some helpful travel tips and resources! Things to Keep in Mind When Traveling: Keep your care team’s contact information easily accessible, including after hours and emergency…
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In Case You Missed It…
Quest Media is an innovative, adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities. With so many valuable…
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CureDuchenne Fuerza 2025 Unites Mexico and Global Duchenne Community in Landmark Event
CureDuchenne Fuerza 2025, hosted by the CureDuchenne International Program on October 25, 2025, brought together more than 400 attendees with the goal of improving care for individuals with Duchenne and Becker muscular dystrophy. Over 200 participants joined in person in Mexico City and another 200 joined virtually from across Mexico and nine other countries. This international conference served as a critical…
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We shout, ‘Not today, Duchenne!’ and Duchenne whispers back
My oldest son, Max, was diagnosed with Duchenne muscular dystrophy (DMD) in 2010, when he was 4. The doctor told us to expect that he’d need help with all of his activities of daily living in his teens and that he would die in his early 20s. Max turns 20 on Nov. 9. The doctor’s…
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Welcoming the New Members of PAAC for Fall 2025
PPMD’s Adult Advisory Committee (PAAC) recently expanded with 19 inspiring new members, bringing the committee to its largest size ever—73 members strong. These incredible individuals bring diverse academic backgrounds ranging from marketing and communication to engineering, cognitive science, and even a PhD in disability studies. They also speak multiple languages including Spanish, Russian, French, and…
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Exoskeletons Improve Movement for Those with Neuromuscular Diseases
Exoskeletons are wearable devices that can provide physical support and improve functional mobility for people with mobility issues, including some with neuromuscular diseases. As their name implies, they have the structure of an “outside skeleton,” but they generally use a power source to assist the user’s movement. Exoskeletons are most often used to support and…
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DMD drugs show promise despite trial’s missing main goal: Sarepta
Exon-skipping therapies Amondys 45 (casimersen) and Vyondys 53 (golodirsen) show “positive and encouraging trends” for people with Duchenne muscular dystrophy (DMD), even though top-line results from a Phase 3 trial testing the treatments showed the study failed to meet its main goal, developer Sarepta Therapeutics said. Results from the Phase 3 ESSENCE clinical trial may have been…
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Updates on Entrada’s exon skipping clinical trials
As an early investor in Entrada Therapeutics, we are pleased to share their progress on their exon-skipping programs in Duchenne. For Exon 44: Entrada completed enrollment for the first cohort of the ex-US ELEVATE-44-201 study for those amenable to skipping exon 44, and are on track to report data in Q2 2026. They expect to…
