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Researchers at the University of Rochester are seeking adults with myotonic dystrophy type 2 (DM2) for a longitudinal natural history study (LEOPARD-DM2: Longitudinal Endpoint Optimization Providing an Assessment of Relevant Drugs…

Joshua Vinson enjoys rain, camping, and cooking. Joshua works as a Quality Assurance Specialist in medical records processing. Their NMD diagnosis is Laing Distal Muscular Myopathy.  I think about fire…

For many people living with generalized myasthenia gravis (gMG), the journey is not just defined by symptoms—it’s shaped by uncertainty. Uncertainty in diagnosis. Uncertainty in treatment. And for a significant…

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…

Motherhood is an incredible journey, layered with joy, growth, challenges, victories, and an abundance of love. For moms living with neuromuscular disease, the role of motherhood can sometimes entail additional…

Monica Torres is a 42-year-old mom of 6. Monica was born and raised in Puerto Rico and recently moved to the city of New York. She has a service dog…

Researchers at participating clinical research sites are seeking individuals with amyotrophic lateral sclerosis (ALS) for a phase 3 study (PREVAiLS). This study will evaluate the safety and efficacy of the…

Q&A with Fiona Cauley about her comedy, accessibility challenges, and advocacy living with Friedreich ataxia (FA).

Carlee Weber and Nicole Lucas This month, the Muscular Dystrophy Association (MDA) is launching an important advocacy campaign urging Congress to advance policies that improve the lives of family caregivers…

CIAO1-related neuromuscular disorder is an inherited condition that was first reported on in late 2023. It is caused by variants in the CIAO1 gene and primarily affects muscle function, though…