March 2026

Each year, MDA presents awards to recognize people who are making a lasting impact on research and care for people living with neuromuscular diseases. From scientists to clinicians to advocates, the 2026 recipients reflect the depth of excellence and leadership across the neuromuscular field. Meet this year’s honorees. 2026 MDA Legacy Award for Achievement in…

Know More

PPMD is proud to share our partnership with the Cooperative International Neuromuscular Research Group (CINRG) to advance the expanded Duchenne Natural History Study (eDNHS) study. Joining PPMD in support of the eDNHS study is Insmed Gene Therapy, LLC; ITF Therapeutics, LLC; NS Pharma, Inc; Santhera Pharmaceuticals (Switzerland), Ltd; Sarepta Therapeutics, Inc; Solid Biosciences Inc; TRiNDS,…

Know More

Stephanie Chicas is 32 years old and lives in Alexandria, VA. Stephanie has SELENON congenital muscular dystrophy and uses a ventilator via a tracheostomy. She loves cuddling with her cat, Matcha, while reading a book and enjoying a cup of matcha latte. Stephanie also enjoys going for walks in the park, attending dance class, and…

Know More

My family needs more space. I wrote about this recently, and we have since decided not to remodel our current home. Since there’s no room to add on, we’re now focused on finding a new, larger house. We have a big family. My husband, Jason, and I share seven children: Lexi, 24; Max, 20; Chance,…

Know More

A new 3D model of Duchenne muscular dystrophy (DMD) reveals that while gene therapy can bolster muscle strength, it may be unable to halt the progressive scarring that drives the disease, according to a study by researchers at Genethon. Findings suggest that “microdystrophin” gene therapies, similar to several currently in clinical use, successfully improve muscle…

Know More

Researchers at Natera are seeking female carriers of Duchenne/Becker muscular dystrophy (DMD/BMD) and their affected or unaffected biological children for an observational study (DYADS study). This study will collect blood samples and health information from participating pairs (mother and child). Findings from this study could help in development of non-invasive prenatal screening tools for DMD/BMD.…

Know More

On Feb. 19, my girlfriend, Amanda, and I presented at a seminar titled “AI in Social Work” at the National University of Singapore’s School of Computing, on behalf of our accessible art studio, Rebirth Ensemble. It explored how we can harness artificial intelligence (AI) to drive social impact by supporting accessibility innovations for vulnerable populations.…

Know More

To design effective clinical trials for new therapies, researchers need to know how to measure success. Several years ago, four neuromuscular researchers realized there was a gap in the knowledge needed to develop therapies for limb-girdle muscular dystrophy (LGMD). Jeffrey Statland, MD, a professor of neurology at the University of Kansas Medical Center in Kansas…

Know More

Next week, researchers, clinicians, industry leaders, and families will gather at the 2026 MDA Clinical & Scientific Conference, hosted by the Muscular Dystrophy Association (MDA), to discuss the latest advances in neuromuscular disease research and care. Ahead of the event, Bionews, the parent company of this site, sat down with Sharon Hesterlee, PhD, the MDA’s president…

Know More

Researchers at NMD Pharma A/S are working to better understand generalized myasthenia gravis (gMG) and study efficacy of a potentially new treatment. The study People who have generalized myasthenia gravis (gMG) may be eligible to participate in a phase 2 clinical trial (SYNAPSE-MG) to evaluate the safety, efficacy, and duration of effect of the investigational therapy…

Know More