The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Happy girl with mito engaged in play with her carer at The LIly Foundation family support weekend Happy girl with mito engaged in play with her carer at The LIly Foundation family support weekend

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Fighting mito, finding hope

Our vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure.

Together we’re navigating the complexities of mitochondrial disease; today raising awareness of mito across the globe; tomorrow unlocking the cure through pioneering research; forever supporting the mito community and empowering everyone to make a difference.

What is mitochondrial disease?

smiley young boy with mito, walking down a sunny lane with the assistance of a walking frame

Every other day in the UK, a baby is born who may develop serious mitochondrial disease.

Mitochondrial disease, or ‘mito’, is a rare genetic disorder that can affect people in very different ways. Symptoms can start at any age and can involve any organ in the body. There is currently no cure for mitochondrial disease, and in some cases, it can be life-limiting. However, treatments to manage symptoms are available and there is active research taking place globally to find a cure. Thanks to research, we are learning more daily about mitochondrial disease.

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 affected by mitochondrial disorders, but also has the potential to benefit millions of others.

That’s why, despite being a little-known disease, mito could be the key to some of the most important medical breakthroughs of our time.

  • £10m

    Raised
    since 2007

  • 1200

    Families
    supported

  • £200k

    Donated
    to patients

  • Over 20

    Research projects
    funded

See our work in action

In 2024, 80% of patients do not have a genetic diagnosis for mitochondrial disease, and that’s simply not good enough. Without one, there is no chance of finding a cure, being offered treatment or simply being accepted on a clinical trial. And, possibly the hardest thing of all for some, reproductive options are severely limited.

Last year, Millie and Tony lost their beautiful baby boy, Otto, to mitochondrial disease. For Millie, getting a confirmed diagnosis for Otto was incredibly significant, and here she explains why. It’s stories like theirs that make The Lily Foundation determined to change things.

Help us to support parents like Millie and Tony, and improve the lives of everyone affected by mitochondrial disease.

Mito news

Supporting those who care for mitochondrial disease patients

The Lily Foundation were delighted to support a recent Clinical Study Day that gave us the opportunity to talk to an audience of healthcare professionals and raise awareness of the many ways we’re there for patients and families affected by mitochondrial disease.

South West Golf Day raises over £12,000

Lily’s very first South West Golf Day tee’d off to great success at Cumberwell Park Golf Club in beautiful Wiltshire last Friday. Thanks to everyone who turned up to enjoy some golf and good fun whilst raising valuable funds to help fight mitochondrial disease.

Painting a picture of mitochondrial disease

We know mitochondrial disease inspires incredible bravery in patients and their families, dedicated fundraising in our supporters and pioneering work in the research lab. But this is the first time we’ve seen the disease inspire the conception of a beautiful piece of art.

Time is running out!

Secure your place today for the Great North Run on 8th September and be part of the most iconic half marathon on the planet. But hurry – places are filling up fast!