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Lyza Weisman (23) was diagnosed at 13 months old with spinal muscular atrophy (SMA). She was raised in the deep mountains of Colorado before attending Loyola Marymount University in Los Angeles for her…

Quest Media is an innovative adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and…

Researchers at NS Pharma are seeking boys with Duchenne muscular dystrophy (DMD) amenable to exon 44 skipping therapy to participate in a phase 2 clinical study (clinicaltrials.gov ID: NCT05996003) of their…

This year has been an eventful year for newborn screening in neuromuscular disease, with potential further progress on the near horizon. We began 2025 with all 50 states screening for…

For many families with kids, the end of summer includes preparations for heading back to school for a new year of growth, learning, and activities. On top of school supplies,…

Researchers at Solid Biosciences are seeking boys with Duchenne muscular dystrophy (DMD) to participate in a phase 1/2 clinical trial (INSPIRE DUCHENNE) to evaluate the safety and efficacy of the investigational…

Find answers to the five most common corticosteroid questions as well as other considerations if you’re prescribed them to treat a neuromuscular disease.

My name is Santana Gums and I have LGMD-2b. I live in Arizona and work as a Legal Assistant. Back in February of this year, I attended the Arizona Muscle…

Researchers at Albany Medical College are seeking parents and caregivers of children with Duchenne muscular dystrophy (DMD) to participate in an observational REDCap survey about their adherence to DMD care guidelines…

Charcot-Marie-Tooth disease (CMT) encompasses a group of inherited disorders that affect movement and sensation in the arms, legs, hands, and feet. Common symptoms include lower leg weakness, foot deformities, reduced…