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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
27 February 2019

The long road to diagnosis

Harry Cozens has been living with MERRF syndrome all his life, but it took nearly 20 years for his illness to be correctly diagnosed. We talked to Harry and his mother, Mandy Norris, about an ordeal all too common for adults with a mitochondrial disease.

Personal stories
11 February 2019

A Lily love story

Let the Valentine's Day vibes wash over you with this moving video of Sophie and Jamie's wedding.

Personal stories Fundraising
29 January 2019

Take a leap for Lily

A tandem skydive is an unforgettable thrill and a great way to fundraise for The Lily Foundation, writes Morgan Gillam.

Personal stories
25 January 2019

My son the young carer

I'm so proud of my son for caring for his younger brother who has mitochondrial disease – but now that he's leaving home we're not sure how we'll cope, writes Alison Haywood.

Personal stories
13 November 2018

The hardest journey

Oxfordshire wool producer Stuart and his wife Kira suffered heartbreak this April when they lost their three-year-old daughter, Grace, to mitochondrial disease. Stuart turned to competitive shearing as a way to cope, qualified for the national team against the odds, and is now training for the World Shearing Championships. Here, Stuart talks openly about dealing with grief, and the happy memories of Grace that mean so much.