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

Fighting mito,
finding hope.

News

Stay connected with the mitochondrial disease community

Discover the latest updates from The Lily Foundation and the wider mitochondrial disease community. You’ll find news, personal stories, research updates and insights into the vital support we provide for those affected by mitochondrial disease.

From inspiring stories of families living with mitochondrial disease to breakthroughs in mito research and much more, there’s plenty going on. Sign up to our newsletters and follow us on social media to stay informed and connected – don’t miss a thing!

Filter by category:

All Articles Support Research Events Personal stories Awareness Fundraising Fitness

Support
6 January 2026

The Lily Foundation unveils first-of-its-kind Guide to Mitochondrial Disease

It takes dedication. It takes insight. It takes countless hours of careful writing, reviewing and refining. And today, we’re incredibly proud to announce a very special resource we believe will make a real difference: The Lily Foundation Guide to Mitochondrial Disease – the first patient-focused resource of its kind in the UK.

Fitness
2 January 2026

Train stronger for your charity run

New year, new challenge? if you’ve signed up to fight mito and support The Lily Foundation in 2026, make sure you start your training right. Whether you’re a novice runner or a seasoned marathon finisher, building strength and stability is key to running well and staying injury-free. These simple, no-equipment exercises will boost endurance, improve balance and target the muscles that matter.

Awareness
18 December 2025

A year of progress, hope and community – a message from our founder

This past year has brought powerful steps forward for the mito community, from landmark scientific breakthroughs to the incredible efforts of our supporters across the UK. As we take stock of all that’s been achieved, we invite you to read a special message from our Founder and CEO, Liz Curtis, reflecting on the past 12 months and the hope guiding us into 2026.

Personal stories
28 November 2025

It takes belief to live with mitochondrial disease

For Harry and his mum, their belief has been tested again and again. Harry lives with MERRF, but it took nearly 20 years for his syndrome to be correctly identified. We spoke to them about an ordeal all too common for adults with mitochondrial disease – the long and winding road to a diagnosis – and how they’ve learnt to live with positivity and belief in the face of an uncertain future.