Archives

Julianne Meiser, MSS, LCSW, an Outpatient Social Worker in the Division of Neurology at the Children’s Hospital of Philadelphia. By nature, medical emergencies are unexpected, stressful, and often traumatic experiences.…

In the movie “Extraordinary Measures,” Dr. Stonehill invented a treatment for Pompe disease. This is the true story of how John Crowley helped save his children’s lives.

Kathryn Arvidson champions accessible mental health treatment for people with disabilities.  Kathryn was diagnosed as a child with a rare degenerative neuromuscular disorder, Pompe disease, that impacts her mobility and…

In this Quest Podcast episode, we chat with Emmy Award-winning filmmaker and disability advocate Samuel Habib and his father and longtime collaborator Dan Habib, the creative duo behind the extraordinary…

When Tyler Long was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) during his senior year of high school, doctors advised him that this diagnosis meant that he should plan his future…

People from across the neuromuscular field gather to learn and collaborate at the 2026 MDA Clinical & Scientific Conference.

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

Tips for participating in neuromuscular clinical trials and research studies, from MDA community members who have been there.

Follow these steps to appeal insurance denials for gene therapy, or any neuromuscular disease treatment, and improve your chances for approval.

Tracking research updates and breakthroughs that help accelerate treatments and cures across MDA diseases.