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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
11 May 2022

International Nurses Day 2022

International Nurses Day is observed around the world on 12 May (the anniversary of Florence Nightingale's birth) to honour the contribution that nurses make to society. To mark the occasion we hear from Chloe Poole, a Metabolic Clinical Nurse Specialist at Bristol Royal Hospital for Children.

Personal stories Fundraising
23 March 2022

Release your inner fundraiser!

After losing their 18-month-old son, Aidan, to mito, Simon and Lucy dedicated themselves to supporting other mito families and fundraising to find a cure. Here the couple share their tips on how to make a difference, from running a marathon to nailing a corporate sponsorship pitch.

Research Personal stories
23 December 2021

Meet the Medical Board: Prof Joanna Poulton

We're sharing some short Q&As with our Medical Board members, to give an insight into their roles and find out what its like to work at the leading edge of mitochondrial research. This month we meet Professor Joanna Poulton, ​​Honorary Consultant in Mitochondrial Genetics at Nuffield Dept of Women's & Reproductive Health, University of Oxford.

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.