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

Research Personal stories
8 April 2026

Professor Bobby McFarland among TIME100 Most Influential People in Health 2026

Leading mitochondrial disease expert Professor Bobby McFarland has been recognised in the TIME100 Most Influential People in Health 2026, marking a significant moment not just for his work, but for the entire mitochondrial disease community. We spoke to him about what this accolade means personally, and for the whole community.

Events
30 March 2026

Lily Ball raises over £100,000 to drive research forward

Last weekend our spectacular Burlesque Ball raised an incredible £100,000 to drive mitochondrial research forward. An evening filled with glamour and sparkle, it was also filled with hope – hope for a future where we’re no longer simply managing mitochondrial disease but curing it. A future brought one step closer with the launch of our ambitious new UK Mitochondrial Disease Research Institute.

Personal stories Fundraising
20 March 2026

Team Hope smashes £50,000 milestone at Bath Half Marathon

Team Hope has done it! Supported by the incredible Swindon running community, Hope’s mum Caroline and friends smashed through their £50,000 fundraising target at the Bath Half Marathon earlier this month. From Parkruns to plane jumps, their determination and generosity are helping us drive vital research and support for families living with mitochondrial disease.

Research Personal stories
3 March 2026

A global search. A local breakthrough

Lizzy has spent years, and tens of thousands of pounds, travelling the world in search of answers to daughter Mathilde’s health problems. Today, that journey has come full circle thanks to our Precision Diagnostics project. Mathilde’s story shows why diagnosis is not just a scientific milestone but a turning point that can transform care and understanding for families living with mitochondrial disease.

Support Awareness
23 February 2026

Rebuilding after a rare disease diagnosis

When 41-year-old Robbie was suddenly diagnosed with mitochondrial disease, his family’s world was turned upside down. Through love, resilience and the support of The Lily Foundation, they’ve found the strength to move forward, even when the path ahead remains unclear. This Rare Disease Day, we want to share Robbie’s story – and the challenges that come with a rare disease diagnosis.

Awareness
21 February 2026

Three and a half million isn’t rare

Did you know that 1 in 17 people live with a rare disease? That’s not actually that rare, so chances are someone you know is affected. We’re on a mission to end the isolation felt by rare disease patients, so as we approach Rare Disease Day on 28th February, join us and help campaign for better care and raised awareness for rare.