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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
23 June 2021

Happy as Harry – living with Leigh syndrome

When Lucy’s son Harry was diagnosed with Leigh syndrome, a rare and life-limiting form of mitochondrial disease, her world changed overnight. Here Lucy shares her family’s journey – from the shock of diagnosis to the realities of day-to-day life – offering a powerful insight into what it’s really like to care for a child with a complex, little-known condition.

Research
3 May 2021

Research Focus: TRANSFORM therapy

The Lily Foundation is funding a study into a potentially life-changing new treatment for mitochondrial patients affected by epileptic seizures. Here to tell us about it is Dr Albert Lim, part of the research team at the Wellcome Centre for Mitochondrial Research in Newcastle.