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Critical ALS Legislation You Need to Know About As we near the end of ALS Awareness Month, the work is just beginning to get critical legislation for those with ALS…

Since her diagnosis with ALS at age 32, Gwen Petersen has poured her energy into advancing the science of her disease through participation in clinical and observational research. Gwen works…

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 and lives with Laing distal myopathy.  I think about fire a lot.…

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).