Courtney Dion
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.
Courtney@thedionfund.org
joe Dion
Joe Dion is the co-founder of The Dion Foundation, a non-profit organization dedicated to raising awareness and funding research for rare and ultra-rare genetic diseases affecting children, with a focus on Limb-Girdle Muscular Dystrophy (LGMD2C). Established in 2023, The Dion Foundation was born out of Joe’s personal journey as the father of two children recently diagnosed with LGMD2C. Driven by the mission to find a cure, Joe and his wife, Courtney, established the foundation with a clear objective: to fund research and accelerate the development of potential treatments and cures.
As a seasoned CEO and fourth-generation retailer of Dions Wine and Spirits, a prominent family business in the Greater Boston area, Joe has leveraged his extensive business acumen to drive the foundation's initiatives. His strategic leadership skills, honed over 20 years of expanding and innovating within his family business, are now channeled into advocacy for rare diseases. Joe has successfully facilitated fundraising efforts, collaborated with global leaders in neuromuscular research, and advocated for supportive legislation at both local and federal levels.
Joe is committed to advancing the fight against rare diseases, using his platform to raise awareness and foster collaboration within the community, biotech industry, and legislative bodies. His dedication to the Dion Foundation exemplifies his unwavering commitment to improving the lives of those affected by genetic disorders.
Joe@thedionfund.org
