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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,…

Researchers at Novartis are working to better understand idiopathic inflammatory myopathies (IIMs) and to evaluate a potential new treatment for individuals living with IIM who have not responded to previous treatments…

Meet the 2026 MDA Legacy and Momentum award winners who are making a lasting impact on research and care for the neuromuscular community.

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…

How MDA is supporting a research consortium aimed at boosting clinical trial readiness for developing LGMD treatments.

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)…

Every year on Rare Disease Day, communities around the world come together to shine a light on conditions that are too often overlooked or underfunded. Historically, rare diseases have been…

In this Quest Podcast episode, we chat with internationally recognized fashion designer Izzy Camilleri, a true pioneer in adaptive fashion. She shares how her successful career in high-end fashion took…

X-linked myotubular myopathy (XLMTM) is a rare, inherited neuromuscular condition that primarily affects infant males. It is one of the most severe forms within a group of disorders called centronuclear…

What should you do if you have a variant of unknown significance in genetic testing results? Hear from experts in the neuromuscular field.