The Lily Foundation

The Lily Foundation The Lily Foundation are fighting mitochondrial disease and finding hope.

Founded in 2007 in memory of Lily, who passed away at 8 months, we’re dedicated to funding research, raising awareness and providing support for everyone affected by the condition. The Lily Foundation

Lily Anna Merritt was a beautiful little girl who, despite being given days to live, blessed the world with eight precious months. Whilst The Lily Foundation was created in her name and inspired by

her resilience, it exists today for the many children, adults and families who face the challenges of mitochondrial disease. We’re dedicated to funding research, raising awareness and providing support for everyone affected by this complex, incurable condition. 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.

15/06/2026

We'd love you to meet Terri and Alba 👋🩷

We had the privilege of speaking with them at one of our Family Weekends, where families affected by mitochondrial disease came together to connect, share experiences, and support one another.

The work of the Lily Foundation helps families feel seen, understood, and less alone on their journey. These special weekends are only possible because of the incredible support we receive from our community. Thank you for helping us make moments like these happen. 🙌

Support the Lily Foundation today, and find an event - https://www.thelilyfoundation.org.uk/charity/get-involved/events/

One leap. One decision. One brave moment!!☁️✈️This summer, challenge yourself and take the leap for The Lily Foundation,...
13/06/2026

One leap. One decision. One brave moment!!☁️✈️

This summer, challenge yourself and take the leap for The Lily Foundation, tick it off your bucket list and help change lives.

📍 Join us at one of five UK locations:
Durham | Nottingham | Old Sarum (Salisbury) | Peterborough | Whitchurch

Ready for the ultimate adrenaline rush? Sign up today -
https://www.thelilyfoundation.org.uk/charity/get-involved/events/lily-skydive-weekend-2026/

12/06/2026

This is our Lily Team 🩷

Behind Lily is a passionate team brought together by one shared mission: to improve the lives of those affected by mitochondrial disease, raise awareness, and help drive progress toward a cure.

We may be a small team, but we are united by a powerful purpose. Working remotely across different locations, we regularly come together to support the patients and families who remain at the heart of everything we do.

Meet our team - https://www.thelilyfoundation.org.uk/charity/what-we-do/our-team/lily-staff/

A huge congratulations and thank you to Matt and Team Matilda for completing the Yorkshire Three Peaks Challenge and rai...
12/06/2026

A huge congratulations and thank you to Matt and Team Matilda for completing the Yorkshire Three Peaks Challenge and raising an incredible £1,905 for The Lily Foundation! ⛰️

The team took on this tough challenge inspired by Matt's brave six-year-old daughter, Matilda, who lives with mitochondrial disease. Their determination, teamwork and fundraising efforts will help us continue supporting families and funding vital research.

We are so proud of everything Team Matilda has achieved and incredibly grateful for their support. Thank you for making a difference! 🩷

Feeling inspired? Why not take on a challenge of your own? Visit our website to find an event and help change lives.

11/06/2026

This week is 🩷

Carers Week is an opportunity to recognise the millions of people who quietly and tirelessly support their loved ones every day. It shines a light on the challenges carers face, while celebrating the strength, dedication and compassion they show.

Read Lucy and Harry's story on our website. Lucy cares for her son Harry, who lives with mitochondrial disease. While caring is a role that never stops, it is also one filled with love, resilience and moments of joy.

"When Harry was born, everything seemed normal. A healthy pregnancy and a full-term baby. As far as Lucy, a first-time mum, was concerned, nothing suggested that life would soon take an entirely different path."...

To discover more about their journey, visit our website -
https://www.thelilyfoundation.org.uk/news/you-never-switch-off-caring-for-someone-with-mitochondrial-disease/

What an exciting few days it was for us last week in Angers.For the first time ever at Euromit, we’re not just supportin...
11/06/2026

What an exciting few days it was for us last week in Angers.

For the first time ever at Euromit, we’re not just supporting research. We’re helping to lead it, shape it and share it too.

Katie is part of the TK2d steering committee set up by UCB and is first author on a poster looking at early symptoms and how TK2d changes over time, as part of phase II of the ATP study.

Liz was also presenting a Lily poster on the Experiences of Diagnosis study.

Neither of them has presented at Euromit before, so this feels like a really special moment. It shows how Lily’s role is growing: not just funding research but helping bring people together and making sure research is shaped by the real experiences families share with us.

We did lots of Lily logo spotting last week at Euromit.We were especially proud of Jamie, our Lily-funded PhD student fr...
10/06/2026

We did lots of Lily logo spotting last week at Euromit.

We were especially proud of Jamie, our Lily-funded PhD student from the Newcastle group, who gave a really engaging and professional talk about her work in research helping us understand how faults in a gene called UQCC1 can stop cells making energy properly, causing serious mitochondrial disease in babies and young children.

Another highlight came from Renata and the team at UCL who presented the work done so far on the Lily Precision Diagnostics Project, which is looking at how diagnosis can be improved for people with suspected mitochondrial disease.

Run the 10th anniversary London Landmarks Half Marathon with Team Lily in 2027!🏃‍♀️✨Join Team Lily for an unforgettable ...
10/06/2026

Run the 10th anniversary London Landmarks Half Marathon with Team Lily in 2027!🏃‍♀️✨

Join Team Lily for an unforgettable 13.1-mile journey through the heart of London and help support children and families affected by mitochondrial disease.

The London Landmarks Half Marathon is one of the capital’s most iconic races, and its 10th anniversary promises to be bigger and better than ever. This unique closed-road event is the only half marathon to pass through both the City of London and the City of Westminster, taking runners past famous sights including Big Ben, St Paul’s Cathedral, the Tower of London, the London Eye and more.

Take on this amazing challenge, make memories to last a lifetime, and help fund vital research into mitochondrial disease. Sign up today and become a mito superstar! 🩷

During last week’s Euromit, Liz and Katie were dashing between talks, posters and meetings to make the most of this rare...
09/06/2026

During last week’s Euromit, Liz and Katie were dashing between talks, posters and meetings to make the most of this rare opportunity to be in the rooms where real change is made.

They were proud to present to pharma and biotech companies about our vision for a UK Mitochondrial Disease Research Institute, and why it’s so important to involve them right from the beginning.

These connections bring really helpful perspectives on the practical things that can make such a difference: how treatments are designed, what regulators need to see, and how research can be set up in a way that gives it the best chance of reaching patients.

Last week saw Euromit taking place in Angers, France – the largest international conference dedicated to mitochondrial d...
08/06/2026

Last week saw Euromit taking place in Angers, France – the largest international conference dedicated to mitochondrial disease research.

With 865 participants attending from more than 40 countries, it’s great to see our own Liz Curtis and Katie Waller representing Team Lily at such a prestigious event.

Professor Patrick Chinnery gave the main opening talk at the start of the week. He rewound to 1995, the last time Euromit was held in France, and showed just how far the science has come since then.

There’s still a long way to go, but there’s a real feeling of energy and we’re excited to be part of it.

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