MDA 2025: Conference begins, marking another year of progress
Hundreds of participants from 39 countries to gather for this year's event
The Muscular Dystrophy Association‘s (MDA) annual Clinical & Scientific Conference kicked off over the weekend, bringing together patients, caregivers, researchers, clinicians, academics, advocates, and industry leaders to discuss the latest in science and care related to a range of neuromuscular diseases.
This year’s conference will bring together hundreds of participants from 39 countries, Morgan Roth, chief marketing officer of the MDA, told Bionews, the parent company of this site.
“Having that level of information being shared, and plans made to collaborate, and sending specimens so somebody doesn’t have to start from scratch — that does my heart a lot of good because it means there’s progress happening,” Roth said. “Every time there’s a conference, somebody figures something out that leads to the next thing.”
The MDA conference, which is being hosted in-person in Dallas and can also be attended virtually, will run through Wednesday.
Morgan Roth, chief marketing officer at MDA
The event comes at a particularly uncertain time for the neuromuscular disease community in the U.S., Roth noted, as congressional legislation and executive orders are poised to slash funding for medical research and Medicaid, the publicly funded program that provides health insurance to Americans with disabilities and low income. The MDA has been stepping up its efforts to advocate for those who may be affected by these policies.
“We’re in a really precarious time, you know, where a lot of the progress could be potentially threatened by some of the policy that’s either pending, or is being proposed, or has been made through an executive order,” Roth said. “What’s important right now is that we’re all getting on the same page and agreeing: This is not going to be good for the welfare of our community; this is going to stymie or stop, or at the very least slow, research that we really need.
“We need to get our arms around [policies that are coming out] and understand what the implications are [and] who they’re going to impact, then start building our case in a very united way — the patients, the caregivers, the physicians, and the researchers,” Roth said. “[We need to] get an action plan together, because some of this could be really really damaging, not only to research but to the way kids and families are able to access benefits and care in the long run.”
Opposing Medicaid, research cuts
As part of this effort, the MDA has created an online platform to help members contact their elected representatives and ask them to oppose cuts to Medicaid.
“The more voices we have clicking the link to their representative, the better chance we have to avoid cuts to Medicaid,” Roth said. “This is super urgent.”
The MDA is dedicated to advocating and advancing research for a number of neuromuscular disorders, including muscular dystrophy, spinal muscular atrophy (SMA), Pompe disease, amyotrophic lateral sclerosis (ALS), myasthenia gravis, and Charcot-Marie-Tooth disease (CMT). The MDA’s mission is to empower people with these conditions to live longer, more independent lives.
Talks at the four-day conference will cover topics ranging from gene therapy and clinical trials to strategies for nutrition, physical therapy, and developing a sustainable multidisciplinary care team. This year’s conference is particularly momentous as the MDA celebrates its 75th anniversary.
“This is a community that, 75 years ago, had no hope. There was no cure, there was nothing known about muscle, there was no real muscle science,” Roth said. “MDA literally created the field of neuromuscular research in medicine.”
‘We’re catching on’
For Roth, who lives with CMT, this conference is especially powerful because it marks how far the community has progressed. Roth said when she was diagnosed in the 1970s there was virtually no care to support her and she had little ability to discuss her disease, even with her family. As a result, she often felt lazy or clumsy, as if her condition were her fault or that she wasn’t trying hard enough.
Things are radically different now. Medical care is better and there’s greater acceptance and fellowship among the global neuromuscular disease community. Roth points to Lily Sander, one of the MDA’s 2025 national ambassadors and a teenager with CMT whose experience has been far different from the one Roth said she faced.
“She had a diagnosis, she had options, she had surgery, and she has a community that is familiar with her disease, so she’s not lazy or clumsy — she’s got CMT,” Roth said. “To me, that means MDA has just moved the needle so darn far, and it’s just gonna get better and better for people coming into the world with rare and neuromuscular diseases, because we’re catching on.”
Roth urged people who are new to the neuromuscular disease community to get involved with MDA and join in advocacy, helping people living with these disease now as well as those who will come in the future.
“Everything that you wish your experience wasn’t, you can either amend or fix for somebody who’s coming up behind you by getting invested in advocacy,” she said. “I think the future is going to be amazing, but we do have a few battles to fight.”
Note: The SMA News Today team is providing live coverage of the 2025 MDA Clinical & Scientific Conference March 16-19 in Dallas. Go here to see the latest stories from the conference.
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