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.
What does it take to live with mitochondrial disease?
We want to show you just what it takes to live with mitochondrial disease.
Meet Harry, Mandy, Katie, Tom and Leia, all real people, living with mito every day. Leia and her family show incredible courage as they fight her incurable condition. Harry and his mum Mandy have hope and belief for the future. They all have what it takes – but they can’t do it alone.
With your support, The Lily Foundation can keep providing care for families like these, funding vital research and finding hope where it’s needed most. Do you have what it takes to help us fight mito? Donate today to make a difference.
The 2026 London Marathon was a landmark moment for Lily, bringing together our biggest mass-participation team at a sporting event ever! An incredible 52 runners took on the challenge – including some travelling from as far afield as the US and Norway – together raising an astonishing £193,000 to fund vital mitochondrial disease research and support.
Leading mitochondrial disease expert Professor Bobby McFarland has been recognised in the TIME100 Most Influential People in Health 2026, marking a significant moment not just for his work, but for the entire mitochondrial disease community. We spoke to him about what this accolade means personally, and for the whole community.
Last weekend, a team of six incredible runners from Team Poppy took on the London Marathon in support of The Lily Foundation. And as they crossed the finish line, they passed an extraordinary milestone: £300,000 raised for us over the years. A figure that represents a commitment to fundraising and unwavering love for 15-year-old Poppy, who lives with mitochondrial disease.