Archives
MDA Ambassador Guest Blog: My Myasthenia Gravis Voyage
Tina Vassar lives in Durham, North Carolina with her dog Milo. She is 69 years young and has lived with myasthenia gravis for over 30 years. Like many people living…
MDA Joins Forces to Protect NIH Funding
It’s no secret that MDA advocates are a force on Capitol Hill and have routinely commanded the hall of Congress during MDA on the Hill over the years. Jennifer Lane…
Tags: Advocacy Updates, Community, Resources
Clinical Research Alert: Clinical Study for Adults with Generalized Myasthenia Gravis (gMG)
Researchers at Vor Bio are conducting a global phase 3 clinical study (UPSTREAM MG) for adults with generalized myasthenia gravis (gMG) who are AChR or MuSK+. The study will evaluate…
Simply Stated: Introduction to Morimoto-Ryu-Malicdan Neuromuscular Syndrome (RFC4 deficiency)
Morimoto–Ryu–Malicdan neuromuscular syndrome (MRMNS) is an inherited condition that was first reported on in late 2024. It is caused by variants in the RFC4 gene and is classified as a…
Tags: Simply Stated
A Look Back at the First Quest Product Guide of 2026
The MDA Quest Media Product Guide is designed to help you find the products you need to live a more independent, stylish, fun, and all-around great life. All the products…
Tags: Community, Product Guide, Relationships, Young Adults
Accessible Dental Care: Why You Should Go to the Dentist and How to Prepare for a Visit
Accommodations at the dentist’s office, adaptive tools for brushing and flossing, and more tips for hygiene and overall health.
Understanding ADSS1 or ADSSL1 Myopathy
Q&A with Priyanka Kakkar about ADSS1 myopathy, founding Cure ADSSL1, and driving research and care for rare diseases.
Second-Act Career: Sharon Townsend Finds Purpose in a New Role
Sharon Townsend, living with limb-girdle muscular dystrophy, found renewed confidence and purpose in a second-act career.
Tags: Employment, Quest for Success
Progress Now: Drug Approvals and Clinical Trial Updates
Current clinical trials enrolling, recent study results, new drug approvals, and more across MDA diseases.
Considerations and Tips to Plan for Pregnancy with a Neuromuscular Disease
Moms living with neuromuscular diseases and maternal-fetal medicine specialists share experiences and expert guidance for pregnancy, delivery, and postpartum.