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In my last column, I wrote about the increasing difficulties I’m having safely navigating my home using the “furniture surfing” technique. I wondered whether it was time that I break out the walker and give it another try. I also mentioned my plans to contact my doctor to discuss starting physical and occupational therapy. A…

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Glucocorticoid use can help maintain breathing ability and arm function in adults with Duchenne muscular dystrophy (DMD), a new study reports. Importantly, the study found that glucocorticoid treatment was shown to be helpful even when only considering the time after patients had lost the ability to walk — which commonly occurs in the later stages…

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Capricor Therapeutics, which received early funding from CureDuchenne, has shared news of positive interactions with the FDA for their CAP-1002 program for DMD.  Capricor will be having an additional meeting with the FDA in Q2 2024, where they will share data and discuss the plan for submitting a rolling BLA, which might expedite their path…

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PPMD and Duchenne UK are excited to announce the recipient of their Joint Call for Therapeutic Projects. Pediatric neuromuscular neurologist Professor Peter Kang MD, from the University of Minnesota Medical School, has been awarded the grant for his research project titled “Phase 1 clinical trial of myogenic progenitors for DMD.” The grant, totaling $500,000, will…

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PPMD is excited to announce another significant milestone in Duchenne newborn screening: Ohio will be the first state to screen all babies for Duchenne! More than 129,000 babies are born in Ohio every year, and the state expects to identify 35 babies with Duchenne annually. Ohio was the first state, followed by New York and…

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Oral treatment with EDG-5506, now known as sevasemten, continued to stabilize muscle function after two years in men with Becker muscular dystrophy (BMD) taking part in a Phase 1 trial. That’s in contrast to the progressive deterioration of motor function seen during the natural course of BMD in the absence of treatment. According to Edgewise Therapeutics, the…

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PPMD is excited to mark its 30th anniversary at the launch of the PPMD Together meeting series, taking place April 19-20, 2024, in Cincinnati, Ohio. Founded three decades ago by a small group of passionate parents and grandparents within the Duchenne community, PPMD has grown into a beacon of hope, driven by the unwavering dedication of parents, families,…

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It’s now tornado season here in Nebraska, which is part of the U.S. Tornado Alley. I could write a column about Duchenne muscular dystrophy (DMD) being like a tornado in the way it came tearing through the life we’d established when my three sons — Max, 18, Rowen, 15, and Charlie, 13 — were diagnosed.…

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As my time with the assistance dog charity I work for comes to an end, I’m seeking opportunities to occupy my time and keep me meaningfully engaged. At the same time, I’m looking forward to discovering other means of employment to ensure that I realize my goal of self-reliance and financial self-sufficiency. This includes covering…

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Champion Volunteer Job Board  Welcome to the CureDuchenne Champions Volunteer Opportunities board! Here, you can explore a range of rewarding volunteer positions dedicated to supporting individuals and families affected by Duchenne muscular dystrophy. Whether you’re passionate about fundraising, advocacy, event planning, or community outreach, there’s a role for you to make a meaningful difference in…

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