Fighting mito,
finding hope.
Donate through JustGiving to help The Lily Foundation fight mitochondrial disease and find hope for patients and their families.
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.
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.
Raised
since 2007
Families
supported
Donated
to patients
Research projects
funded
In 2024, 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.
Last week comedian Kevin Day embarked on a mammoth ‘March of the Day’ challenge, walking 63 miles across London via thirteen football grounds. His aim was to spread the word about mito during global awareness week, but would his feet hold up and would he make it all the way? Find out more…
Since 2007 we’ve raised an incredible £10 million, money that’s helped us support those affected by mitochondrial disease and fund research into treatments. We’ve no intention of taking our foot off the gas, so we’re delighted to welcome two new team members to this area of our charity – meet Nina and Victor.
A massive thank you to everybody who got involved in this year’s awareness campaign as part of World Mitochondrial Disease Week. A host of activities took place up and down the country thanks to so many of our supporters embracing our mission to put mitochondrial disease on the map.
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