Amy Atkinson is a cofounder of the Danon Foundation, a nonprofit organization dedicated to supporting individuals and families affected by Danon disease. Motivated by her family’s personal connection to the condition, she has become a leading advocate for strengthening diagnostic pathways, accelerating research, and ensuring that patient perspectives are represented in clinical development and regulatory decision-making. Atkinson works closely with scientists, biotech companies, and the rare-disease community to expand awareness and drive progress toward earlier diagnosis and effective treatment options for patients worldwide. Amy Atkinson is a co-founder of the Danon Foundation, a nonprofit organization dedicated to supporting individuals and families affected by Danon disease. In remembrance of her daughter, D’layne, she is committed to supporting families navigating Danon disease and in building community. Atkinson plays an active role in fostering peer support networks, helping families connect with resources, and advancing education and advocacy initiatives. Her lived experience and commitment to empowering families have made her a trusted advocate within the global rare-disease ecosystem.
