International Research Congress

Thank you to everyone who attended the 2026 IRC in Chicago. We look forward to seeing you in Madrid, Spain: June 24-25, 2027.

Thank you for joining us in Rosemont, Illinois (Greater Chicago area) for our annual global gathering dedicated to advancing research in Facioscapulohumeral Muscular Dystrophy (FSHD). Leading scientists, clinicians, industry partners, and emerging investigators convened to collaborate at the forefront of discovery and innovation.

Together, we will accelerate the science that is transforming FSHD research and paving the path toward effective therapies. This year’s program focused on three core scientific tracks:

Mechanisms of Disease & Genetics
Clinical Care Progress with an Emphasis on Human Studies
Biomarkers of Disease Activity and Progression

View this year’s final program book here. Abstract book to be shared in Fall 2026.

We look forward to another impactful year of knowledge exchange, multidisciplinary collaboration, and meaningful progress for the FSHD community.

Keynote Speakers Announced for IRC 2026

We are delighted to announce the keynote speakers for the 33rd Annual International Research Congress on FSHD.

Dr. April Pyle

Professor of Microbiology, Immunology, and Molecular Genetics, UCLA

Dr. Pyle will explore the emerging science of muscle regeneration, highlighting new biological insights and their implications for therapeutic development in FSHD. Drawing on advances in gene therapy from across the muscular dystrophy landscape, her keynote will examine how lessons from parallel indications can inform—and accelerate—innovation for FSHD.

Dr. Russell Butterfield

Professor of Neurology & Division Chief of Neuromuscular Medicine, University of Utah

Dr. Butterfield will deliver a forward-looking keynote on the FSHD drug development landscape, offering a clear-eyed assessment of where the field stands today and the opportunities that lie ahead. His talk will spotlight the rapidly evolving therapeutic pipeline, emerging modalities, and the scientific, clinical, and regulatory steps needed to translate discovery into effective treatments for patients.

Thank you to our generous sponsors of the 2026 IRC:

Presenting Sponsors

Avidity Biosciences and Novartis logos

Scholarship Sponsors

Myologica, Muscular Dystrophy UK, and Friends of FSH Research logos

Event Sponsors

Scholar Rock, Dyne Therapeutics, Epicrispr Biotechnologies, Cook Myosite, Mirecule, Sarepta Therapeutics, and Souffle Therapeutics logos

Advancing Global FSHD Research Together

For more than 30 years, the FSHD Society’s International Research Congress (IRC) on facioscapulohumeral muscular dystrophy (FSHD) has served as the premier global meeting dedicated exclusively to FSHD research. Each year, world-leading scientists, clinicians, and industry partners convene to share discoveries, accelerate translational science, and shape the path toward effective therapies.

With rapid advances in biomarkers, outcome measures, and clinical development, the IRC continues to catalyze innovation and global collaboration across the FSHD research ecosystem. Our recent meetings drew over 240 in-person and 100 virtual participants from academia, industry, and patient advocacy—underscoring the momentum and commitment driving the field forward.