Building Community and Advancing Care at MDA 2025

The 2025 Muscular Dystrophy Association (MDA) Clinical & Scientific Conference held in Dallas, Texas, marked the 75th anniversary of the MDA. As clinicians harkened back to the most valuable elements of the meeting, they highlighted the great collaborative opportunities that are facilitated by this conference. Although MDA gathers experts on an international scale, attendees are able to network with friends old and new, stay up to date on the latest advances in neuromuscular research and it future directions, and brainstorm how to address pertinent challenges facing the field.

In these interviews with The American Journal of Managed Care^®, speakers make clear that MDA is more than just a scientific conference. This meeting helps to build a supportive professional community that, alongside MDA’s grant support program and Cancer Care Network, has benefited numerous health care providers in their pursuit towards common goals: improving patient outcomes, treatment, and care.

This transcript has been lightly edited for clarity; captions were auto-generated.

Transcript

What is your favorite aspect about MDA and why do you believe health care professionals should attend?

Sharon Hesterlee, PhD: Definitely the networking. I think the presentations are excellent, of course, but I think it's being able to talk to people at poster sessions and really have those 1-on-1 discussions about research and where we are. We all spend a lot of time in front of cameras doing meetings, so I think it's great to be able to catch up with people in person and just have those side chats. And you never know where they're going. A lot of times they lead to some really interesting future projects.

Tania Gendron, PhD: I have greatly benefited from MDA through the grant support, which has allowed me to conduct biomarker research, and I also appreciate their approach in accelerating research, advancing care, and disseminating new findings related to neuromuscular diseases through in-person conferences. These conferences facilitate the exchange of cutting-edge research in clinical trials, the building of relationships, and the sharing of new ideas critical for preventing and treating neuromuscular diseases. As such, I would urge health care professionals to continue attending MDA conferences.

Guilio Cossu, MD: I think the major goal achieved by MDA, Telethon in Italy, Généthon, or Muscular Dystrophy UK, all these associations have the great advantage of supporting research to get to new therapies. But at the same time, make these therapies immediately available to the community of clinicians and medical personnel, following the patient and making the families aware of these new treatments. This is something that has to be done with extreme care to prevent illusions that the cure is available or is around the corner. From my long experience, I would say, unfortunately, it is not yet so.

Barry Byrne, MD: The annual MDA Clinical & Scientific Conference is really an amazing opportunity to collect the best practices in the clinical world and hear the best science that's coming from all the labs that are supported by MDA and contributing to new knowledge in neuromuscular research. Having all of those factors in 1 place over the several days in the meeting is really an opportunity to exchange ideas and improve the care of patients with neuromuscular diseases through the MDA Care Center Network, which is really a unique asset of the MDA.

Leigh Maria Ramos-Platt, MD: I think it's always good to learn about updates, know that we are not alone. If we all get together, we can push policy and we can get ideas to push policies forward. It's always good to hear what other people are doing, and if it's a good idea, we should implement that practice at our own centers.

I just went to a recent conference, another neuromuscular conference, where I met with other center directors, and they gave great ideas when [it] came to the cardiac care for Duchenne muscular dystrophy that we weren't doing. I thought, “What a good idea, we should do that.” The MDA conference is a good way to pick up those tips and implement them for us to do best practice.

I also enjoy sharing what we're doing and getting feedback right away. It’s been about 2 decades since I've been going. It’s good to see the same faces as we go through this new time, and this is a very interesting time for neuromuscular medicine. When I started going to these conferences, the conversation that I had with patients was very different than the conversations that I have today. There's a lot more hope today. And a lot of the people that attend these conferences are people that, in a way, I grew up with—at least professionally with—and it's just nice to see everyone.