June 2026

The CITGO Lake Charles Refinery raised more than $750,000 to support the Muscular Dystrophy Association (MDA) at its 41st annual MDA Golf Classic, an annual golf fundraiser. Since 1985, CITGO Lake Charles has raised $8.5 million for the MDA. The total amount raised this year — $756,800 — set a new record. As in past…

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Some events are hard to picture before you attend. You may wonder who will be there, whether the topics will apply to you, or if it is worth carving out the time. MDA Engage is designed for people living with neuromuscular disease, families, caregivers, and loved ones who want practical information, real conversation, and a…

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Each year, I attend at least one national gathering of people living with muscular dystrophy. In addition to learning about the most updated care standards, treatment strategies, and research initiatives, I’m able to bond with those who share a similar diagnosis, and have made some dear friends. The upcoming Parent Project Muscular Dystrophy (PPMD) 2026…

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On June 22, 2026, PPMD Chief Executive Officer  Katherine Beaverson, MS attended the U.S. Department of Health and Human Services (HHS) Clinical Trials Roundtable in Washington, D.C., joining leaders from across government, industry, academia, and the patient advocacy community.  The roundtable, convened by HHS leadership, focused on a central challenge: how to cut the duration…

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June is a quiet month here in rural Nebraska. Most days, only neighbors drive on the street outside our home, and you can hear the wind moving through the plains. That may sound boring to some of you from the big cities, but here it is supposed to be relaxing and serene. My children have…

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Rob Roozeboom is the founder of RISE Ministries and the creator of RiseFest, one of the largest Christian music festivals in the Midwest. Living in Iowa with muscular dystrophy, Rob is passionate about sharing hope, encouraging others through faith, and advocating for people living with disabilities. He and his wife are proud parents who believe…

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Health Canada has accepted and granted priority review to Italfarmaco’s application seeking the approval of oral givinostat, sold in the U.S. under the brand name Duvyzat, to treat Duchenne muscular dystrophy (DMD). The priority review status is reserved for therapies that could significantly improve the benefit-risk profile over current treatments. This designation shortens the evaluation…

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Researchers at Alexion, AstraZeneca Rare Disease are conducting a clinical study for adults with generalized myasthenia gravis (gMG) who are currently receiving ravulizumab treatment. The study will evaluate whether a planned schedule for gradually lowering oral corticosteroids (OCS) can safely help patients reduce or stop these medications while keeping their gMG symptoms stable. The study…

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Back in March, I wrote about how living with Duchenne muscular dystrophy (DMD) has shaped my perspective on accessible design. After decades of moving through systems that were not built with people like me in mind, I had come to appreciate how disability can offer valuable insights into solving accessibility challenges. A couple of months…

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The experimental medication delpacibart braxlosiran (del-brax) reduced biological markers of facioscapulohumeral muscular dystrophy (FSHD) disease activity in a Phase 1/2 clinical trial, meeting the study’s goals, according to developer Novartis. Based on results from earlier parts of the trial, FORTITUDE (NCT05747924), investigators selected a dosage for this group of participants, dubbed the biomarker cohort. Intravenous…

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