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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 Awareness
9 October 2026

“Not a minute goes by when we don’t think of Connie”

For Kerry and Ryan, Baby Loss Awareness Week has always held special significance. A midwife for over 14 years, Kerry’s supported countless families through pregnancy, birth and loss. But last year, the week took on an entirely different meaning when the couple had to say goodbye to their baby daughter just four weeks and four days after she was born.

Personal stories Fundraising
11 September 2026

A father’s race against mitochondrial disease

When Gary’s young son Fionn was diagnosed with an ultra-rare form of mitochondrial disease, their world was turned upside down. But out of that darkness has come a determination to make a difference, and today Gary races a motorcycle carrying the Lily logo across Ireland, turning his family’s journey into a mission to raise awareness, fund research and put mito on the map.

Personal stories Fundraising
9 August 2026

A lasting legacy for little Ari-Boo

When Pooja and Terry lost their daughter Aria to mitochondrial disease, they channelled their grief into action. What began as a way to honour their little girl’s life has grown into an incredible fundraising team, and one year on from Aria’s passing, they’re raising vital funds, building support networks and helping other families affected by mitochondrial disease to feel less alone.

Personal stories
3 July 2026

Remembering Keira, forever five

To mark Bereaved Parents Day on 3rd July, we spoke with Liz, who lost her firstborn daughter Keira to mitochondrial disease 10 years ago. A decade on, Liz is still learning to live alongside grief – raising her younger daughter Chloe, honouring Keira’s memory and navigating a loss that never truly fades.

Personal stories
8 June 2026

“You never switch off” – caring for someone with mitochondrial disease

Carers Week is a time to recognise the millions of people who quietly, tirelessly care for their loved ones every day – and to shine a light on the challenges they face and the strength they show. For Lucy, caring for her son Harry, who lives with mitochondrial disease, is a role that never stops – but is also filled with love, resilience and moments of joy.

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.

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.