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News

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
7 May 2024

Living with mitochondrial disease and deafness

Jojo was diagnosed with mitochondrial disease as a teenager, and one of the symptoms he suffered was losing his hearing. It was a frightening and lonely experience, he writes – until some amazing technology came to the rescue.

Personal stories Awareness
23 April 2024

Running to spread the word about mitochondrial disease

Often taking on a charity challenge means attempting a one-off event such as running a race or climbing a mountain. But once wasn’t enough for Lily supporter Darren, who took on the incredible feat of running a half marathon every day for a month.

Personal stories
4 February 2024

The simple device that’s saving lives

To mark Feeding Tube Awareness Week (4th-10th February) young adult mito patient Danielle tells us how, after years of eating problems and misdiagnoses, the use of a feeding tube has changed her life.

Personal stories Fundraising
4 January 2024

“If I can do it, anyone can do it”

Waistband a bit tight after all the festive indulgence? Why not sign up for a Lily event like our Operations Manager Claire, who’s taking on her biggest fitness challenge yet in 2024 – the London Marathon.

Personal stories
26 September 2023

Making a difference through personal experience

Last week, BBC Points West ran a story about team member Sarah, who came across The Lily Foundation back in 2018 after losing her two daughters to mitochondrial disease.

Personal stories Fundraising
18 September 2023

Shining the spotlight on an inspirational Royal Parks runner

Every summer the organisers of the Royal Parks Half Marathon launch their Inspire campaign, sponsored by Royal Bank of Canada, to seek out five inspirational runners, and this year one of their winners is Lily supporter Reanna!

Personal stories Fundraising
26 July 2023

A pleasure doing business with you

As well as the individuals and families who support us, we have a number of corporate partnerships. One such connection is with the owner of a family business who has a very personal reason to donate to us year after year.

Personal stories
31 May 2023

Blurring the lines between partner and carer

With Carers Week taking place from 5th-11th June, we wanted to highlight some of the challenges unpaid carers face and recognise the quiet contributions they make to society. We spoke to Josey who cares for her husband Chris, who has mitochondrial disease.

Personal stories
25 May 2023

“Hopefully I can help make people feel less alone”

Every volunteer has a story to tell. To mark Volunteers’ Week (1st to 7th June), Becca told us why she regularly gives up her time to volunteer for The Lily Foundation supporting mitochondrial disease patients and how she benefits from the experience.

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