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In this episode of the Quest Podcast, we chat with Cerys Davage, a Welsh podcaster and content creator living with limb-girdle muscular dystrophy (LGMD), who has turned her diagnosis into a platform for connection and representation. Cerys opens up about growing up in a family that chose openness over silence, the moment in university when…

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CureDuchenne has submitted comments to the U.S. Food and Drug Administration (FDA) on several proposed policies that could affect how new gene therapies and other genetic treatments are developed and reviewed for Duchenne muscular dystrophy, Becker muscular dystrophy, and other rare diseases.  As a nonprofit organization focused on improving lives of people with Duchenne, CureDuchenne works with patients, families, researchers, doctors, companies, and regulators to help bring promising therapies to people who need them as quickly and safely as possible.  Why These FDA Policies Matter for Families …

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Chloe Crabb lives in Colorado with spinal muscular atrophy (SMA). She is a high school freshman and absolutely loves all things related to education and advocacy. Chloe lives with her parents, two cats named Mochi and Gracie, and her dog, Maggie. FUN FACT: Chloe loves sports cars and her dream car is a Porsche 918…

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Researchers at Carle Foundation Hospital in Urbana, IL are seeking individuals living with Becker or Duchenne muscular dystrophy (BMD/DMD) to participate in an observational study using Diffusion Tensor MRI to examine muscle function and structure. The study aims to better understand why muscles in BMD and DMD may be more prone to damage, and how…

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A protein once thought to mainly protect chromosome ends may also be essential for keeping muscle stem cells ready to repair injuries. Researchers found that TRF2 helps these cells maintain their identity and coordinate the cycle of rest, repair, and renewal.

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Scientists have identified an immune response that may explain why statins cause muscle pain, weakness, and exercise intolerance in some people. The finding could eventually lead to treatments that protect muscles while preserving the drugs’ lifesaving cardiovascular benefits.

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The first thing I tell others about myself is that my husband and I share seven children: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Being a mom is literally my favorite thing about myself. Caring for my family is my main purpose in life. Most mothers will…

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The next Clinical & Scientific Conference hosted by the Muscular Dystrophy Association (MDA) will take place March 21-24, 2027, in Orlando, Florida, and registration for the signature annual event — dubbed by the MDA “the leading international meeting dedicated to neuromuscular diseases” — is now open. The conference, to be held at Rosen Shingle Creek…

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MDA National Ambassador Lily Sander at the 2026 MDA Clinical & Scientific Conference The annual MDA Clinical & Scientific Conference is the largest global gathering of leading experts dedicated to the advancement of care and research for people living with neuromuscular disease (NMD). Each year, neurologists, researchers, industry partners, and patient advocates convene to share…

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Respiratory infections can become serious more quickly in people living with Duchenne muscular dystrophy (DMD) because respiratory muscles weaken over time. Understanding how to recognize symptoms early, use airway clearance techniques effectively, and know when to seek medical care can help reduce complications and improve outcomes.  At the CureDuchenne FUTURES 2026 Annual Conference, families gathered to learn from experts about one of…

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