A patient advocacy group founded by two parents has partnered with a biotech company on a gene therapy for limb-girdle muscular dystrophy Type 2C/R5 - it was just cleared to start a clinical trial

Dion Foundation Co-Founder and President Courtney Dion discusses with Atamyo Therapeutics CEO Stéphane Degove the many ways that patient advocate groups can support the work that biotech companies do.

The Experts

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.

Stéphane Degove is the CEO of Atamyo Therapeutics. He is a biotech entrepreneur with a 25 years experience in pharma/biotech and strategy. He graduated from ESCP (majoring in Finance), worked at Sanofi in Finance and was co-founder and CFO in 2003 of a biotechnology company in cancer and thrombosis, Endotis Pharma. He co-founded in 2013 and was CEO of an immuno-oncology biotech, Gamamabs Pharma. Under his leadership, Endotis Pharma and GamaMabs Pharma raised € 70 million from international funds and built portfolios of innovative products developed up to Phase II.