Every other day in the UK, a baby is born who may develop serious mitochondrial disease
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.
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.
What a day! Last weekend, the streets of London were buzzing with energy as Team Lily took on the London Landmarks Half Marathon – and what a race it was.
If you’re thinking this looks like a fun way to fundraise, why not register your interest today and join Team Lily in next year’s race.
Just announced – the wonderful Jon Richardson will be making a special appearance at our Manchester Comedy Night on Wednesday 18th June! MC Sally-Anne Hayward and comics Josh Jones, Chris Washington and Faizan Shah complete a fantastic line-up. Grab your ticket today and help make history at our first ever northern night out.
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.