The Lily Foundation

Lily Anna Merritt was a beautiful little girl and despite being given days to live, she graced this world with eight months of life. The Lily Foundation was built on Lily's strength and inspired by her fighting spirit.  Although The Lily Foundation was founded in Lily's memory, it is not for Lily. It is to give hope, answers and support to the many other children and families that face the challenges of this disease today.

There is no cure or treatment for Mitochondrial Disease.

As we celebrate our 6th year, we are very proud to introduce our new animation.

This video was created to simply and visually explain how important Mitochondria are, and what happens when they go wrong.

This video will be used nationally to help educate and raise awareness of Mitochondrial Disease.... To watch the video click on the play icon...

Our Vision

Our vision is to change this. The Lily Foundation is committed to finding a cure for Mitochondrial Disease. We have a three point mission - fund research to improve diagnosis and treatment options, raise awareness of these conditions to they are more easily recognised, and support families with sick children.

Recent research has shown that 1 in 200 healthy newborns in the UK are born with genetic changes that can cause Mitochondrial Disease and are at risk of passing these changes onto their offspring.

Our Challenge

Our first challenge was to raise funds for research that would improve speed and accuracy of diagnosis rates and ultimately find a cure. We are supporting a number of UK hospitals and research centres to strive towards achieving this goal.

Help us to make a difference. Have a look at The Lily Foundation events or challenge yourself and get involved. There may be something that might just interest you!

Latest News

Mitochondrial Donation Update

A huge thank you to all our Lily Families who have taken the time to write to their MP. The debate in the House of Commons on Monday was very positive and it was clear that our families have been crucial in helping MPs understand these techniques.  We are all now waiting to hear a date for the regulations to be laid in Parliament - hopefully in November. You can read the debate HERE.

Lily family Weekend

In partnership with Roald Dahl's Marvellous Children's' Charity we are really excited to be able to hold our first every Lily Family Weekend in Reading this September. This event will bring together families affected by Mitochondrial Disease from all around the UK and give access to some of the UK's best medical specialists!

Team Lily Does Tough Mudder

A 31 strong team of Lily supporters took part in the London West Tough Mudder on sat 26th April. It was a grueling 12 miles of hills and obstacles (including ice baths & electric shocks!) but they all came out smiling and raised over £19K for the Lily Foundation!!! Thank you all so much x

£2 a month appeal

£2 is less than the cost of half a pint of lager and is definitely less than a G&T! If all our supporters could spare £2/month you would be making a real difference. Click here to help!


Huge congratulations to all our amazing runners and thank you to our loyal supporters and invaluable volunteers - we couldn't do it without you all! To see Lily's Dad Dave interviewed by Denise Lewis click [here]

Sponsor the Lily Team

There are many people doing amazing challenges to raise money for our charity.  Click here and you can sponsor anyone who has an online sponsorship page.

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