MDA 2026: This year’s MDA meeting provided a glimpse into the future
Nearly 200 speakers highlighted advances in research, treatment, advocacy
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Muscular Dystrophy News Today is wrapping up coverage of the 2026 Muscular Dystrophy Association (MDA) Clinical & Scientific Conference, which ran from March 8-11 in Orlando, Florida, and online.
This year, more than 2,400 attendees from 40 countries gathered in person and virtually to discuss recent advances in neuromuscular disease research and care — and what the future of the field looks like. The annual meeting is the largest global gathering dedicated to the neuromuscular disease community, according to MDA’s meeting recap.
The four-day event featured 32 sessions, 63 oral presentations, and more than 500 posters. Nearly 200 expert speakers discussed topics relevant to the neuromuscular disease community, spanning preclinical, clinical, and real-world studies. The sessions covered happenings across a wide range of neuromuscular diseases, including muscular dystrophy, spinal muscular atrophy, amyotrophic lateral sclerosis, and myasthenia gravis.
More than two dozen patient advocacy organizations were represented at the meeting, along with 50 industry exhibitors.
Bionews, the parent company of this site, served as a media partner to MDA at this year’s event, with reporters working on-site and virtually to bring our readers the latest updates. All MD-related meeting coverage is available to our readers.
Interview with MDA CEO kicked off Bionews meeting coverage
We kicked off a week ahead of the event by interviewing Sharon Hesterlee, PhD, president and CEO of the MDA, who discussed what she was most looking forward to at this year’s meeting.
Hesterlee also opened the conference on March 9 with a welcome address, during which she discussed the state of neuromuscular disease research and what’s needed going forward.
Our responsibility — together — is to ensure every breakthrough translates into longer lives, greater independence, and better outcomes for the families we serve.
“The MDA Clinical & Scientific Conference is where discovery becomes the direction,” Hesterlee said. “Gene-targeted therapies, precision diagnostics, and innovative care models are moving from bench to bedside faster than ever before.”
Hesterlee added: “Our responsibility — together — is to ensure every breakthrough translates into longer lives, greater independence, and better outcomes for the families we serve.”
John Crowley, president and CEO of the Biotechnology Innovation Organization (BIO), then delivered the meeting’s keynote address, titled “Driving the Future of Innovation, Policy, and Patient Impact.”
Crowley, the father of two children with the rare neuromuscular condition Pompe disease, talked about how far the field has come, and how patients, families, advocates, and industry leaders all have a role to play in accelerating progress.
“We are living in an extraordinary era for biotechnology — one where innovation, data-driven insights, and patient partnerships are transforming what’s possible for people living with rare diseases,” Crowley said. “For 75 years, the Muscular Dystrophy Association has embodied that spirit, fueling discovery, accelerating new therapies, and uniting a global community committed to transforming the standard of care.”
Following his address, Bionews sat down with Crowley to talk more about the wins he’s seen and the work that still needs to be done. In that conversation, Crowley emphasized the critical importance of patients and their loved ones in spurring progress, stating that “the role of individuals and families is at the core of everything.”
18-year-old MDA national amassador shared her personal journey
Amy Comstock, of the Center for Drug Evaluation and Research (CDER) at the U.S. Food and Drug Administration (FDA), joined the MDA meeting virtually to provide regulatory insights on advancing treatments for neuromuscular diseases.
She discussed FDA efforts to support drug development in the rare disease space and emphasized the importance of collaboration among regulators, patients, researchers, and industry to adequately address the challenges of advancing therapies for small patient populations.
Another meeting highlight came when 18-year-old Lily Sander, the MDA national ambassador, shared her personal journey of living with Charcot-Marie-Tooth disease.
Sander talked candidly about the daily struggles of managing CMT. The teen emphasized the importance of advancing research, treatment, and care for people living with neuromuscular diseases. Her address earned a standing ovation.
Two researchers were honored with awards at the MDA meeting for their contributions to the neuromuscular field. Those honorees are Michio Hirano, MD, of Columbia University Irving Medical Center, who also serves as MDA’s care center director, and Lukasz Sznajder, PhD, of the University of Nevada Las Vegas. Allison Moore, founder and CEO of the Hereditary Neuropathy Foundation and a CMT patient, was also honored for her leadership in elevating the patient voice and advancing care.
In its recap, MDA highlighted other topics of interest from the meeting, including advances in gene editing, RNA-targeted therapies, biomarker development, clinical trial optimization, and evolving models of care. The full agenda shows the jam-packed sessions on offer.
The 2027 meeting is already set to take place next March, again in Orlando, Florida.
