July 2026

Last month, the Purple Parade featured my story on its website. Reading my profile prompted me to reflect on why I continue speaking up about living with Duchenne muscular dystrophy (DMD) and what I hope these conversations might achieve. The Purple Parade is Singapore’s largest disability-inclusion movement, bringing people with disabilities, their families, businesses, community…

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Italfarmaco reported new data from the Phase 3 EPIDYS trial, showing that quantitative MRI measures of muscle mass and fat fraction were significantly different between the treatment and placebo groups.  Interim analyses from the open-label extension study also indicate a delay in loss of ambulation (LoA), with median age of LoA =17.33 years with treatment,…

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This year’s Be Their Muscle campaign has raised more than $641,000 to support MDA Summer Camp for children and adolescents with muscular dystrophy and other neuromuscular diseases, and to help advance research and care for these patient populations. Resulting from a partnership between the Muscular Dystrophy Association (MDA) and Burn Boot Camp, this year’s campaign has included 400…

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The FDA has scheduled an Advisory Committee meeting for July 29, 2026 to review Deramiocel, Capricor’s investigational cell therapy for Duchenne muscular dystrophy. The meeting will be held virtually, and a live stream will be available for public viewing. The Duchenne community is actively working together to prepare for this important meeting. Following the announcement,…

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John Scurto is a 29-year-old MDA Ambassador from Boca Raton, Florida, who lives with spinal muscular atrophy (SMA) and is a power wheelchair user. He holds an MBA and a graduate certificate in Disability Studies, and he is especially interested in the intersection of business and disability inclusion. With both lived experience and academic training,…

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Researchers at Teachers College, Columbia University (New York) are seeking children living with spinal muscular atrophy (SMA) who are receiving disease-modifying therapy to participate in a pilot study exploring the integration of targeted rehabilitation strategies. This intervention aims to strengthen muscles, enhance neuromuscular coordination, and reduce fatigue, ultimately supporting improved movement and functional abilities in children with…

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I have been involved with the annual Parent Project Muscular Dystrophy (PPMD) conference since 2002. Back then, the conference was attended by fewer than 50 people, almost no one living with muscular dystrophy (MD), and no representatives from pharmaceutical companies. The sessions were presented by scientists who did not speak in layman’s terms. As someone…

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Researchers have uncovered a molecular “switch” that helps explain why exercise keeps ageing muscles healthy. By reducing levels of a gene called DEAF1, physical activity allows older muscles to clear out damage, repair themselves, and maintain strength.

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“You have your hands full.” I have heard that said hundreds of times over the past 25 years, and I hated hearing it. I always had a response ready: “Sure, but my heart is fuller,” I would say. However, I’m currently in a season of life and caregiving where I appreciate that someone notices that…

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Scientists at the University of Oxford have created a calculator that predicts a person’s individual risk of serious muscle disorders from statin medications. Their analysis found that more than 98% of people who qualify for statins are at low risk for these rare complications, despite widespread concerns about side effects. The study also revealed that…

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