The Lily Foundation

The Lily Foundation is a UK-based charity dedicated to improving the lives of people affected by mitochondrial disease. Established in 2007, it is the largest charitable funder of mitochondrial research in Europe and a leading advocate for awareness, diagnosis, and treatment of this rare genetic disorder.

The charity was founded by Liz Curtis after her daughter, Lily, passed away from mitochondrial disease at 8 months old. Finding little medical guidance or family support at the time, Curtis launched the organization to ensure that others facing similar diagnoses would have access to knowledge, community, and hope. Its core mission is to support families, fund research, and ultimately find a cure for mitochondrial disease.

The Lily Foundation collaborates with top UK mitochondrial research centers and has invested in more than 20 groundbreaking projects. It has helped establish national genetic testing programs and influenced UK legislation permitting mitochondrial donation. The charity’s work connects patients with clinicians and scientists to accelerate treatment development and improve quality of life.

Beyond research, the foundation provides practical and emotional assistance to affected families. Programs include respite breaks, peer-support networks, educational resources, and annual gatherings that foster community connection. Public awareness campaigns and fundraising events—such as the Lily Ball and Lily Golf Day—play a vital role in sustaining research and support initiatives.