Courtney Dion is the President and co-founder of The Dion Foundation, a non-profit organization established in 2023 with a mission to raise awareness and fund research for rare and ultra-rare genetic diseases affecting children, including Limb-Girdle Muscular Dystrophy (LGMD2C). Following the diagnosis of two of her three children with this devastating condition, Courtney, alongside her husband Joe, founded the foundation to address the urgent need for research and treatment development for these ultra-rare diseases. With a background as a registered nurse, Courtney brings a deep commitment to patient care and advocacy to her role. She actively engages with the LGMD community, collaborates with non-profit organizations, and works with pharmaceutical companies and patient steering committees to elevate the patient voice. Additionally, Courtney advocates for supportive legislation at both local and federal levels to improve the lives of those affected by rare diseases. Her dedication and expertise drive the foundation's efforts to advance research and advocate for meaningful change in the field of rare disease.