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Fighting mito,
finding hope.

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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
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.

Personal stories
3 October 2017

Racing to beat mito

Congratulations to our daring duo Jon Milne and Sailor Swift, who have made a great start to their circumnavigation of the globe in aid of Lily Foundation. Jon and his teddy bear sidekick, who are sailing in the Clipper Round The World yacht race to raise awareness about mitochondrial disease, have already raised over £1000 on the first leg of their voyage.

Personal stories
25 July 2017

Charlie Gard

Our thoughts and prayers are with Chris Gard, Connie Yates and of course their son Charlie Gard today, as they have been for the last eight months.