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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
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.

Research
16 October 2018

Outsmarting a syndrome

How do you smuggle health-giving enzymes past the body's natural immune system? A Lily-funded project to develop a therapy for MNGIE syndrome is tackling that problem, and looks set to expand scientific understanding of mitochondrial disease in the process. We hear from Dr Bridget Bax, the project's principal investigator at St George's University in London, and postdoctoral research assistant Michelle Levene.

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.