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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
13 September 2018

771 miles in 7 days for Charlie

Charlie was just two years old when she lost her battle with mito. To mark Mito Awareness Week, her Uncle Mike is cycling 771 miles - one for every day of Charlie's life. Here Charlie's dad Steve tells the story.

Personal stories Fundraising
23 March 2018

A mountain to climb

Gareth Edwards had tackled Mount Kilimanjaro and had his sights set on Everest when a rare form of mitochondrial disease left him struggling to climb the stairs. Here he talks about what it's like to be diagnosed in your 30s, and why he chose to donate a portion of his company's profits to The Lily Foundation.

Personal stories
23 February 2018

Marathon man

We catch up with Dave Merritt as he prepares to run his 11th London Marathon for The Lily Foundation, the charity set up in his daughter's name.

Personal stories
19 February 2018

Living with Leigh Syndrome

When Emily was diagnosed with Leigh Syndrome, a type of mitochondrial disease, at the age of two, doctors told her parents to prepare for the worst. However Emily had other ideas. Now 16 and attending college, she just wants to be treated like any other teenager.

Personal stories
19 January 2018

A love beyond words

Twins Lauren and Alex Cianfini share a unique bond that allows them to communicate without words. It's a gift that has proved invaluable in helping the family care for Alex, who has mitochondrial disease and is unable to speak.