Neuromuscular Advocacy Collaborative at the 2025 MDA Clinical & Scientific Conference: Q&A with Paul Melmeyer

Paul Melmeyer, MDA’s Executive Vice President, Public Policy & Advocacy

The 2025 MDA Clinical & Scientific Conference will be held March 16-19, 2025, at the Hilton Anatole in Dallas, Texas. This highly anticipated event will offer a hybrid format enabling participants to join either in person or virtually. The conference gathers distinguished researchers, clinicians, academics, advocates, and industry leaders, to foster discussions and advance discoveries in the ever-evolving field of neuromuscular disease (NMD).

We recently had the opportunity to speak with Paul Melmeyer, MDA’s Executive Vice President, Public Policy & Advocacy, about the role of advocacy in the conference’s activities:

The MDA Clinical and Scientific Conference is coming up in March and brings together scientists and clinicians to learn about and have conversations related to the latest in neuromuscular science and research. Tell us about the marriage between this conference and the MDA Advocacy Team and how the two tracks came together.

The MDA Clinical and Scientific Conference is instrumental to the MDA Advocacy Team’s efforts for a number of reasons. Nowhere else is there a greater and more diverse convening of neuromuscular clinical, research, biopharmaceutical, and community experts under one roof. The conversations that start at the MDA Conference often catalyze policy and advocacy initiatives and collaborations. Furthermore, attendees can join our Advocacy network to get more involved, and Advocacy’s initiatives can be amplified.

What is the Neuromuscular Advocacy Collaborative (NMAC), and when did it begin? 

Since MDA is an umbrella organization, one of the ways we can be impactful is to bring together the many organizations that work on one single neuromuscular condition and find ways for us all to collaborate together on shared priorities. That is why MDA decided to form the Neuromuscular Advocacy Collaborative over five years ago, so we could harness our collective efforts into one powerful force on Capitol Hill.

Who makes up the NMAC and how do the various groups collaborate? What have you accomplished together in years past? 

The NMAC is made up of over 30 patient advocacy organizations who each serve neuromuscular disease communities. Together, we find joint opportunities to work together on advocacy and public policy efforts that will help all our organizations and the community we serve. Together we have successfully advocated for reforms to make air travel more accessible as well as passing legislation to reform FDA’s approaches to rare diseases. Currently we are advocating together to ensure access to pediatric specialists across state lines within the Medicaid program.

What are the goals or objectives for the NMAC session at conference this year?

The goal of our annual NMAC session at the MDA Conference is to reflect on our public policy and advocacy accomplishments of the past year but then plan for the year ahead. We will convene to discuss what we are hearing from our community and what the neuromuscular disease community is expecting from each of our organizations to best serve them. We then work to outline joint priorities and brainstorm advocacy tactics we can collectively launch to make real change.

There will also be a Patient Advocacy Pavilion at conference again this year. What does that look like, and what role does it play at the MDA Clinical and Scientific Conference? 

The Patient Advocacy Pavilion is a wonderful way for many organizations, including those who are NMAC members, to share with the conference goers about what they do and how people can get involved. The Pavilion is centrally located in the exhibit hall, so it’s a great way for groups to share their organizational mission with attendees. The Pavilion continues gain more popularity each year, which is a credit to the organizations who participate.

Details about registration

Don’t miss out on Early-Bird registration rates—secure your spot now. Join us in Dallas, TX to network, collaborate, and learn alongside leading researchers, academics, clinicians, allied health professionals, advocates, and industry experts in the neuromuscular disease field. Register Here

In-Person Early-Bird registration ends December 31, 2024.