Who We Are
Mission
cureEDMD is a patient and family-led, scientist-supported foundation established in 2025 to advance research into evidence-based interventions for Emery-Dreifuss Muscular Dystrophy, a genetic disease marked by life-altering musculoskeletal weakness and contractures, cardiac arrhythmias that can cause sudden death or debilitating strokes, and heart failure. Our mission is to foster collaboration between patients, families, researchers, and drug developers to enable effective treatments that improve the lifespan and quality of life of affected individuals and their families.
Together, we aim to drive innovation, build community, and provide guidance to create a better future for those affected by EDMD.
Accomplishments
Over the past decades, the founders of cureEDMD have raised and donated over a million dollars for research into a treatment or cure for EDMD. These funds have facilitated gene therapy initiatives that have progressed to animal models and the discovery of potential targets for drug discovery.
Please join us! Together we can more quickly reach our goal of effective treatments or a cure for EDMD.
