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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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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.

Research
11 August 2025

Prof Sir Doug Turnbull on mitochondrial donation and the road to scientific breakthrough

For more than four decades, Professor Sir Doug Turnbull and colleagues have been at the forefront of mitochondrial research. Their pioneering work helped lead to the UK becoming the first country in the world to approve the technique of mitochondrial donation IVF, offering hope to families affected by mitochondrial disease. Here, he reflects on the journey, the challenges and what still lies ahead.

Research Awareness
19 February 2025

Raising awareness and sharing perspectives

Earlier this month, The Lily Foundation had the privilege of presenting the human side of mitochondrial disease to a group of clinical genetics registrars. Head of Patient Programmes, Katie Waller, teamed up with mito mum Ami to share heartfelt insights and lived experiences to advance understanding of the condition.