Uniting Organizations to Collectively Advocate for Neuromuscular Diseases: Paul Melmeyer, MPP

WATCH TIME: 7 minutes | Captions are auto-generated and may contain errors.

"All the ways in which our community seeks to thrive while living with a neuromuscular disease are threatened by new impediments. So, there is no shortage of opportunities for the neuromuscular disease community and the [Neuromuscular Advocacy Collaborative] to band together to ensure that our community can access care, benefit from research breakthroughs, and live the life they seek."

The 2026 Muscular Dystrophy Association (MDA) Clinical & Scientific Conference, the largest gathering in neuromuscular medicine, is to be held on March 8 to 11, in Orlando, Florida. The event, focused on the latest advances, will kick off with a welcome reception featuring posters in the exhibit hall and several invitation-only sessions. The second and third days of the conference will include opening remarks, a keynote address, the MDA Legacy and Community Awards, multiple sessions, and a networking reception. On the final day, attendees will have the chance to participate in “New, Novel, and Noteworthy: Neuromuscular Disease Highlights,” featuring oral presentations from abstracts and updates on clinical trials in neuromuscular diseases. ¹

The 4-day event will feature a range of track sessions covering allied health, amyotrophic lateral sclerosis (ALS), care trends, disease mechanisms, drug development, lab-to-life research, and neurology. In these tracks, attendees will get the chance to engage in sessions on topics such as diet and exercise management, adaptive equipment, gene therapy, emerging ALS therapeutics, health care policy, muscle regeneration, inherited neuropathies, and safety considerations in gene therapy. The program will also highlight innovative approaches to patient care, case challenges, and early intervention strategies, with experts leading discussions and providing guidance on advancements in neuromuscular diseases.

Ahead of the event, session chair Paul Melmeyer, MPP, executive vice president of public policy and advocacy at MDA, spoke with NeurologyLive^® to share how advocacy efforts continue to strengthen the neuromuscular disease community. He noted that through the Neuromuscular Advocacy Collaborative (NMAC), organizations are working together to address shared challenges in policy, research, and access to care. Furthermore, Melmeyer highlighted recent efforts focused on bolstering biomedical research funding, promoting health care equity, and supporting policies that enhance quality of life for patients living with neuromuscular diseases.

REFERENCES
1. Agenda Announced for 2026 MDA Clinical & Scientific Conference Featuring Leading Speakers Dedicated to Groundbreaking Research and Clinical Achievements in Neuromuscular Disease. News release. Muscular Dystrophy Association. October 15, 2025. Accessed November 12, 2025. https://www.mda.org/press-releases/agenda-announced-for-2026-mda-clinical-scientific-conference