The Lily Foundation

The Lily Foundation was founded in Lily's memory, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today.

What's Mitochondrial Disease?

Did you know every twenty minutes a child is born who will develop Mitochondrial Disease by the age of 16!? There is no cure for this disease which is for many debilitating and life limiting. We have created an animation to explain how important mitochondria are, and what happens when they go wrong. 

Our Mission

The Lily Foundation has three aims: To fund research to improve diagnosis and increase treatment options, and ultimately find a cure. To raise much needed awareness of these conditions both in the general population and the medical community. To support families affected by this condition.

You can make a difference

Have a look at The Lily Foundation events or challenge yourself and get involved. As supporters you are the ones that make the difference.

The following video was created for our 2015 Ball to show how our families have inspired The Lily Foundation and how The Lily Foundation through your support helps them.

The American Institute of Medicine oversight committee has endorsed mitochondrial donation and agreed it was was ethically and scientifically acceptable to take forward to the FDA for further scrutiny. It’s great news that US families affected by severe mitochondrial disease are a step closer to accessing to these ground-breaking procedures. You can read more about it here.

The Bank Of England Chooses The Lily Foundation as one of their charities of the year 2016

Each summer, Bank of England staff are invited to nominate charities to become one of its two Charities of the Year. We are so honoured that such as prestigious organisation has chosen us as one of their two charities to support in 2015/16.

Our founder and Lily’s Mum, Liz Curtis said “I am absolutely thrilled that bank staff voted to support The Lily Foundation in the coming year, we are looking forward to working with them and supporting them in their fundraising activities. We want to thank Kemal for nominating us and know the vital money staff raise will help us in our ongoing fight for a cure and will give hope to many families”

Thank you to everyone that voted for giving us this amazing honour.