Fighting mito,
finding hope.
Donate through JustGiving to help The Lily Foundation fight mitochondrial disease and find hope for patients and their families.
Mitochondrial disease, or ‘mito’, is a rare, complex and difficult-to-diagnose genetic disorder that affects people in very different ways. It can affect any organ at any age, and often occurs in babies and young children. There is currently no cure, but we’re working hard to change that, and are the largest charitable funder of mitochondrial research in Europe.
Mitochondrial dysfunction has been identified as a key factor in other more common diseases including dementia, Parkinson's disease, epilepsy and cancer. The research we fund and support not only holds promise for individuals with mitochondrial disorders, but has the potential to benefit millions of others too.
That’s why, despite being a little-known disease, mitochondrial disease could be the key to some of the most important medical breakthroughs of our time.
Raised
since 2007
Families
supported
Donated
to patients
Research projects
funded
In 2025, 80% of mitochondrial disease patients still do not have a confirmed genetic diagnosis, and that’s simply not good enough. Without a diagnosis, there is no chance of finding a cure, accessing treatment or being considered for clinical trials. For many, this also means limited reproductive options, which can be one of the hardest challenges to face.
Millie and Tony lost their beautiful baby boy, Otto, to mitochondrial disease back in 2023. For Millie, receiving a confirmed diagnosis for Otto was incredibly important. Here she shares her story and explains why having answers matters. It’s stories like theirs that fuel The Lily Foundation’s determination to make change.
Help us to support families like Millie and Tony, and work towards improving the lives of everyone affected by mitochondrial disease. Together, we can find hope and work towards life-changing breakthroughs.
For many, hearing loss is simply the absence of sound. For Rachel, it’s also been the loss of voice – not just the ability to hear others, but the struggle to be heard herself. For years, she’s stayed silent about the impact deafness has had on her life. Until now. This is her story.
Huge congratulations to our 36 incredible Lily runners who took on Sunday’s London Marathon and raised an astonishing £125,000 to help fight mitochondrial disease. Every single one crossed the finish line – and with the unseasonably hot weather, that was no small feat. You did yourselves, and the mito community, proud!
When Maddie was diagnosed with mitochondrial disease at the age of 22, she and her family felt lost and overwhelmed. Attending their first Lily event gave them hope, a sense of community and a platform to raise awareness. Now they’re on a mission to make a difference – for Maddie, and for others facing similar challenges.
If you have any problems please email [email protected]
