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The Dion Foundation is a nonprofit organization that supports children living with rare and ultra-rare neuromuscular diseases, with a focus on limb-girdle muscular dystrophy type 2C/R5 and related sarcoglycanopathies. It allocates donor funding to research programs, gene therapy development, and first-in-human clinical trials, including U.S.
expansion of the ATA-200 gene therapy study. The foundation provides disease education and patient resources, hosts LGMD-focused conferences and advocacy activities, and helps connect patients and families through community initiatives. It raises funds through endurance events, golf tournaments, casino cruises, charity fishing tournaments, and merchandise sales. The Dion Foundation also collaborates with biotechnology companies, academic centers, and partner families to advance potential treatments and increase awareness of rare childhood neuromuscular conditions.
