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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!

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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.

Research Personal stories
19 September 2025

Mary’s fight for her sight: bringing about a treatment for LHON

When Mary was diagnosed with LHON in 2022, her world changed overnight. But instead of accepting her fate, she took on a fight that could rewrite the story for many facing this rare form of mitochondrial disease. On LHON Awareness Day, discover how Mary’s determination has paved the way for a new treatment – and renewed hope.

Personal stories Fundraising
13 May 2025

Why I made the leap into Lily fundraising

“I couldn’t save my two daughters from mitochondrial disease, but their memory drives me to help others and fight for a brighter future,” writes Sarah Moore, our courageous Corporate Fundraising Manager, who turned heartbreak into hope with a skydiving challenge for The Lily Foundation.

Personal stories Awareness
12 May 2025

Spotlight on a mito trailblazer on International Nurses Day

International Nurses Day on May 12th celebrates the vital role nurses play in healthcare – and few embody that more than the UK’s only Mitochondrial Nurse Consultant. Here, Catherine Feeney tells us about her unique role, leading her own specialist clinic and providing expert reproductive advice to families affected by mitochondrial disease.

Events Personal stories
8 April 2025

Stepping into the ring to fight for a special cause

Harry and Finn, two brave young men who have never set foot in a boxing ring before, have signed up to take part in Lily Fight Night this May. They’d never heard of mitochondrial disease or The Lily Foundation before, so ahead of the big fight we asked them why they’re putting their youthful bodies and good looks on the line for a cause they’ve only just discovered.