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

Fighting mito,
finding hope.

Resource hub

Whether you’re raising funds to help us fight mitochondrial disease, raising awareness or simply looking to learn more about our charity, you’ve come to the right place.

We’ve gathered together some useful resources below to help you raise funds or promote your event or charity challenge. Simply click on the image below and you’ll be able to download the resource you require. You’ll also find links to informative video resources about mitochondrial disease, its symptoms and prognosis.

If you’d like to request any other materials such as balloons or bunting, please email [email protected]. To request a collection tin please fill in the application form.

Fundraising pack

Other useful materials

Support packs

Video resources

Videos are a really effective way to educate people about our work. We’ve collected together some of our most powerful videos below to help you spread the word about mitochondrial disease amongst your friends and colleagues.

In memory of baby Otto

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

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.

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

See our work in action

Being diagnosed with mitochondrial disease can be not only a frightening and upsetting time, but it can also be very lonely. Because mito is so rare, sometimes friends and family just don’t understand, so it’s hard to find people who are in the same situation to talk to, to share hopes and fears with, and find support.

That’s why The Lily Foundation exists.

Watch PhD student Bal’s story about her mitochondrial disease diagnosis, and how The Lily Foundation helped to give her a voice.

What’s mitochondrial disease?

Here’s Bill Nighy to explain in a little more detail what mitochondrial disease is.

Mito is a rare inherited disorder. Our mitochondria are essentially the tiny organelles within our cells that generate most of the energy we require to function.

Without healthy mitochondria, cells cannot function properly and the results can be debilitating and eventually life-ending.

Mitochondrial disease is a complex and difficult-to-diagnose condition that affects people in very different ways. It often affects babies and young children, and the long-term prognosis for sufferers is poor.

With your help

So little is known about mitochondrial disease.

With your help, The Lily Foundation can keep funding research that will one day find a cure.

Please donate what you can to help us keep fighting mitochondrial disease and finding hope for all those affected by this incurable condition.

Reflections on the Lily Family Support Weekend

We hear from mito parents Kerry and Sid about their experiences of attending The Lily Foundation Family Support Weekend.

This event is designed specially for the families of children who have been given a diagnosis of mitochondrial disease, as well as those who have lost children to the condition.

Your support is helping us get closer to effective treatments for mitochondrial disease, as well as improving the lives of those affected by it.

Thank you x