The Speak Foundation Announces 2026 LGMD Scientific Summit
Global researchers, clinicians, regulators, biotechnology leaders, and patient advocates will convene to advance LGMD research and therapeutic development
WASHINGTON, July 27, 2026 /PRNewswire/ -- The Speak Foundation today announced the 2026 LGMD Scientific Summit, an international scientific meeting that will convene leading researchers, clinicians, biotechnology innovators, regulators, and patient advocates to discuss recent advances in Limb-Girdle Muscular Dystrophy (LGMD) research, clinical development, and therapeutic innovation. The virtual event will be held July 31, 2026.
The Summit comes at a pivotal moment for the LGMD field as multiple therapeutic programs advance through clinical development, new biomarkers emerge, and innovative clinical trial approaches continue to reshape rare disease research. Scientific sessions will highlight gene therapy, regenerative medicine, biomarker qualification, natural history studies, patient-focused drug development, and collaborative strategies designed to accelerate new treatments for individuals living with LGMD.
FEATURED SCIENTIFIC LEADERS
Featured researchers include Douglas Sproule, MD, MSc (BridgeBio Neuromuscular); Louise Rodino-Klapac, PhD (Sarepta Therapeutics); Barry Byrne, MD, PhD (University of Florida); John Vissing, MD, DMSci (University of Copenhagen); Nicholas Johnson, MD, MSCI, FAAN (Virginia Commonwealth University); Peter Kang, MD (University of Minnesota); Tahseen Mozaffar, MD, FAAN (University of California, Irvine); Simone Spüler, MD (Charité – Universitätsmedizin Berlin); Brad Williams, PhD (Jain Foundation), and Elizabeth McNally, MD, PhD (Northwestern University).
Additional scientific and clinical presentations will be delivered by representatives from biotechnology companies and nonprofit research organizations advancing therapies for LGMD, including BridgeBio Neuromuscular, Sarepta Therapeutics, AskBio, Genethon, MyoPax, Edgewise Therapeutics, Advertent Biotherapeutics, Kinea Bio, Myogenica, and Cure Rare Disease.
PATIENT-CENTERED DRUG DEVELOPMENT
A featured panel will bring together representatives from the U.S. Food and Drug Administration and the patient community to examine patient-centered clinical trial design, stakeholder engagement, and collaborative approaches to accelerating therapeutic development for rare neuromuscular diseases.
SCIENTIFIC PERSPECTIVES
Nicholas Johnson, MD, MSCI, FAAN
Professor and Executive Vice Chair, Department of Neurology
Virginia Commonwealth University
"We have entered a transformative period for LGMD research. Scientific advances are creating opportunities that were unimaginable only a decade ago, but realizing their full potential will require continued collaboration, rigorous science, and a shared commitment to ensuring that no LGMD subtype is left behind."
Douglas Sproule, MD, MSc
Chief Medical Officer, BridgeBio Neuromuscular
"We are deeply grateful to The Speak Foundation for convening the LGMD community and fostering collaboration among patients, caregivers, clinicians, researchers, and industry, while ensuring the patient perspective remains central to scientific progress. We also thank the individuals and families who have participated in our clinical studies and entrusted us with their time and hope. It is a privilege to contribute to advancing therapies for LGMD, and that trust reinforces our commitment to rigorous science and the urgent development of meaningful new treatments."
SPONSORS
The Speak Foundation gratefully acknowledges BridgeBio Neuromuscular, Platinum Sponsor of the 2026 LGMD Scientific Summit, and AskBio, Bronze Sponsor, for their support and commitment to advancing LGMD research and therapeutic development.
Registration is open to researchers, clinicians, biotechnology professionals, regulators, patients, caregivers, and members of the global LGMD community. To view the program and register, visit TheSpeakFoundation.com/LGMD-Summit.
ABOUT THE SPEAK FOUNDATION
Founded in 2008, The Speak Foundation is a patient-led nonprofit organization dedicated to improving the lives of individuals and families affected by Limb-Girdle Muscular Dystrophy through advocacy, research, education, and public policy. The Foundation convenes the global LGMD community by bringing together patients, researchers, clinicians, industry, regulators, and policymakers to accelerate research, improve access to specialized care, and advance therapeutic development. Signature initiatives include the International LGMD Conference, LGMD Scientific Summit, LGMD Scientific Workshop, LGMD Day on the Hill, LGMD News Magazine, and the LGMD Centers of Excellence.
SOURCE The Speak Foundation
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