#United States #Washington #Speak Foundation #Limb-Girdle Muscular Dystrophy #LGMD Summit

The Speak Foundation's 2026 LGMD Scientific Summit

The Speak Foundation has officially announced the _2026 LGMD Scientific Summit_, an important virtual event set to take place on July 31, 2026. This summit will bring together a wide array of participants including leading researchers, clinicians, biotechnology innovators, regulators, and patient advocates, all aiming to push forward the advancement of research and therapies related to Limb-Girdle Muscular Dystrophy (LGMD).

As the field of LGMD research continues to evolve, the summit represents a crucial moment for stakeholders to collaborate and share insights. With various therapeutic programs moving into clinical stages and the introduction of new biomarkers, the meeting will facilitate discussions on groundbreaking topics such as gene therapy, regenerative medicine, natural history studies, and patient-focused drug development. Each session is designed to address the challenges faced in treating this rare disease effectively.

Featured Scientific Leaders

Among the distinguished speakers will be prominent figures like Douglas Sproule, MD, MSc from BridgeBio Neuromuscular, Louise Rodino-Klapac, PhD from Sarepta Therapeutics, and Barry Byrne, MD, PhD from the University of Florida. Additionally, researchers from renowned institutions such as the University of California, Irvine, and Virginia Commonwealth University will contribute their expertise through presentations and discussions during the summit.

The scientific agenda will also include a special panel focusing on patient-centered drug development, featuring representatives from the U.S. Food and Drug Administration and various patient advocacy groups. This panel aims to explore clinical trial designs that prioritize the needs and perspectives of patients suffering from rare neuromuscular diseases, demonstrating the summit’s commitment to collaborative advancements in treatment.

Perspectives from Scientific Leaders

Nicholas Johnson, MD, FAAN, a Professor and Executive Vice Chair at Virginia Commonwealth University, emphasizes the transformative potential currently present in LGMD research:
_“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, who serves as Chief Medical Officer at BridgeBio Neuromuscular, expressed gratitude for the foundation's efforts to unite the LGMD community and encourage collaboration among various stakeholders:
_“We are deeply grateful to The Speak Foundation for convening the LGMD community and fostering collaboration among patients, caregivers, clinicians, researchers, and industry.”_

Sponsorship and Participation

The Speak Foundation also acknowledges the support of its sponsors, with BridgeBio Neuromuscular being a Platinum Sponsor and AskBio as a Bronze Sponsor for this significant event. Registration is currently open to everyone involved in the LGMD community, including researchers, clinicians, and patients who wish to engage in this vital conversation regarding the future of LGMD treatment.

To learn more about the summit agenda or to register, visit TheSpeakFoundation.com/LGMD-Summit.

About The Speak Foundation

Founded in 2008, The Speak Foundation is a nonprofit organization driven by patients' concerns, dedicated to improving the lives of individuals and families affected by Limb-Girdle Muscular Dystrophy. The organization is focused on advocacy, research, education, and public policy to ensure that crucial advancements in therapy and specialized care are made for those living with LGMD.