August 2025

While every day is a good day to enjoy the simple pleasure of reading, National Read a Book Day on September 6th offers a fun reminder for booklovers to slow down, settle in, and enjoy a good book. This year, we want to spotlight some of the talented voices resonating within the neuromuscular disease community.…

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Results published in the Annals of Clinical and Translational Neurology show that long-term treatment with givinostat, a histone deacetylase (HDAC) inhibitor, in combination with corticosteroids, delayed disease progression in ambulant individuals with DMD.  Compared with natural history controls, individuals receiving givinostat showed positive impacts on time to rise from the floor, four stair climb, and ambulation.  These…

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Dr. Kaitlin Batley, Engage Steering Committee member, MDA Care Center Director, Assistant Professor at UT Southwestern, and neurologist at Children’s Health. As MDA and the Engage Steering Committee gear up for a full day of learning, connection, and empowerment at the upcoming MDA Engage Symposium in Dallas, Texas, the excitement is about more than just…

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Living with muscular dystrophy for 40 years has taught me many things. I’ve written here about the importance of connection, support, and our shared value as humans. Connections can lead to another cornerstone of our existence: community. We join our first community, our immediate family, as soon as we arrive kicking and screaming at birth.…

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Luncheon and Fashion Presentation, Produced and Sponsored by South Coast Plaza,  Funds Transformative Duchenne Muscular Dystrophy Research   NEWPORT BEACH, California (August 21, 2025) – CureDuchenne, a global nonprofit dedicated to funding and finding a cure for Duchenne muscular dystrophy, is excited to announce its second annual Ladies Luncheon Newport Beach at Shady Canyon Golf…

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Researchers have developed a detailed molecular model for the structure of type VI collagen and identified where genetic mutations linked to certain forms of muscular dystrophy (MD) might influence the protein. Findings from their study could ultimately help scientists better understand the mechanisms underlying types of MD that affect collagen VI — collectively known as…

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Top Dallas Chefs and Napa Valley Wines Unite to Support Groundbreaking Research for Duchenne Muscular Dystrophy Dallas, TX – August 21, 2025 – CureDuchenne, a leading nonprofit dedicated to finding a cure for Duchenne muscular dystrophy, is excited to announce Champions in Dallas will return for its second year. The event will take place on…

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August here in Nebraska is sweltering. Not only do the temperatures reach the high 90s, but the humidity is suffocating. I’ll never understand why our kids return to school at this time of year, when it’s so uncomfortable outside. But as I write these words, five of my children have started back to class in…

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“Lily, I think you’re old enough now to advocate for yourself in your 504 meeting today.” I remember my mom saying that like it was a small thing. It wasn’t. I was in middle school, nervous, unsure, and still coming to terms with the idea that having a disability meant I’d have to explain my…

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When I was 13 and fresh from spinal fusion surgery, I sat in a West End theater in London with my family, watching “Les Misérables.” The music stirred my soul and, for a fleeting moment, I imagined myself on stage. But that dream quickly faded. Accessibility barriers at school here in Singapore stopped me from…

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