October 2025

Brayden is 17 years old and has been playing wheelchair basketball since he was 8. He is also a wheelchair track and field athlete. Brayden lives with Charcot-Marie-Tooth (CMT) Type 1A. He first became an MDA Ambassador when he was 5 years old and he loves supporting MDA’s mission. Brayden is consistently on the honor…

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Health Canada has approved Agamree (vamorolone) to treat Duchenne muscular dystrophy (DMD) in patients ages 4 and older, making Agamree the first approved DMD treatment in Canada. Canada’s approval is the sixth for Agamree to treat DMD. The therapy is approved in the U.S., the U.K., and the European Union, as well as in China…

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Each year, the World Muscle Society (WMS) Annual Congress brings together the best minds in neuromuscular research, clinical care, patient advocacy, and industry. The meeting offers a dynamic platform for sharing new data, fostering collaborations, and advancing the science behind therapies for diseases like Duchenne and Becker muscular dystrophy. This year’s event in Vienna, Austria,…

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A couple weeks ago, I co-emceed the Zero Project Asia Pacific Symposium 2025 with my girlfriend, Amanda. The event, a collaboration between SG Enable and the Zero Project, took place at Enabling Village, a community space here in Singapore designed for accessibility. The symposium gathered leaders in Asia to share ideas on how to remove barriers…

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The PPMD team was recently joined by three clinical experts, Dr. Anne Pham-Huy (Pediatric Infectious Diseases Specialist, Clinical Immunologist, and Chair of Immunize Canada), Dr. Jane Taylor (Pediatric Pulmonologist at UPMC Children’s Hospital of Pittsburgh), and Dr. Susan Matesanz (Neuromuscular Neurologist and Medical Director of Clinical In Vivo Gene Therapy at Children’s Hospital of Philadelphia)…

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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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Delpacibart zotadirsen (del-zota), an investigational exon-skipping therapy from Avidity Biosciences, is demonstrating the potential to reverse disease progression in boys and young men with Duchenne muscular dystrophy (DMD) amenable to exon 44 skipping, or DMD44. That’s according to one-year data from the Phase 1/2 EXPLORE44 trial (NCT05670730) and the EXPLORE44 open-label extension (OLE) study (NCT06244082),…

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Delpacibart zotadirsen (del-zota), an investigational exon-skipping therapy from Avidity Biosciences, is demonstrating the potential to reverse disease progression in boys and young men with Duchenne muscular dystrophy (DMD) amenable to exon 44 skipping, or DMD44. That’s according to one-year data from the Phase 1/2 EXPLORE44 trial (NCT05670730) and the EXPLORE44 open-label extension (OLE) study (NCT06244082),…

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“He who has a why to live can bear almost any how.” — Friedrich Nietzsche I love a good quote as much as the next person. When I was teaching music in middle school, I’d sometimes write inspirational or thought-provoking quotes on the whiteboard to encourage conversation or reflection. At times, I’d have the kids find…

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Anybody who has made a monetary donation to support MDA’s mission knows well that their dollars go a long way to change the lives of those living with neuromuscular disease. But what many might not know is that corporate matching programs create an opportunity to double that donation – and double the impact. Companies with…

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