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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 Fundraising
25 November 2021

Why I made the leap into Lily fundraising

I couldn't save my two daughters from mitochondrial disease, but now I'm doing what I can to help others, writes skydiving Lily fundraiser Sarah Moore.

Personal stories
26 October 2021

"I'm so grateful that Emma's part of my work every day."

Christine Beal, co-founder and chair of our partner charity My Mito Mission, tells us about working with Lily, taking her daughter's legacy forward, and why mitochondrial research is worth shouting about.

Research Personal stories
12 August 2021

How Lily research changed our lives

When we lost our first child to mitochondrial disease we feared we'd never be able to have more, but thanks to The Lily Foundation we now have the family we always wanted, writes Claire Tranter.

Personal stories
23 June 2021

Happy as Harry

12-year-old Harry Johnson has Leigh Syndrome, a form of mitochondrial disease. We hear from his mum, Lucy Johnson on learning to live with the condition and what it's like to have a child diagnosed.

Personal stories
23 March 2021

Mito, lockdown and social isolation

For people with mitochondrial disease, the Covid lockdown has added to a sense of isolation that's all too familiar, and emerging safely isn't simply a matter of getting a jab. We hear from three of those affected, plus Lily's resident psychologist.

Personal stories
5 March 2021

International Women's Day: Q&A with Rupinder Bains

Rupinder Bains is a member of The Lily Foundation's Board of Directors, MD of the law firm Pinder Reaux & Associates, and the first ever Asian woman to serve on the Board of The Football Association (The FA).

Personal stories
7 October 2020

Yellow Day - Mito mum's book about grief sheds light on loss

After losing her daughter to mitochondrial disease, children's writer and illustrator Hannah Chapman made a book to help others cope with grief. Here she talks about the creative process behind Yellow Day, and how it first took shape years before her own experience of bereavement.

Personal stories
30 September 2020

Mito stories: Tirion

Read the moving story of Tirion Ray, who died in 2018 after being diagnosed with mitochondrial disease, as told by her mother to The Bristol Post.

Personal stories
4 September 2020

Mito stories: Charlie

Charlie Withers tragically died aged 2, after being diagnosed with mito at 18 months. Read her story as told to The Sun by her mother, Anna.

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