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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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Awareness
2 September 2024

10 facts about dystonia and mitochondrial disease

People affected by mitochondrial disease may also suffer from dystonia, a condition where incorrect signals from the brain cause uncontrollable and sometimes painful muscle spasms. September is Dystonia Awareness Month, so here are 10 facts about the links between dystonia and mito.

Personal stories Awareness Fundraising
24 August 2024

Running in the family

When baby Lily came into the world 18 years ago, no one could have guessed the legacy she would leave behind. To commemorate what would have been her 18th birthday this month, her family have signed up to take on a very special collective challenge, and they need your support to get them over the line.

Research Awareness
8 August 2024

Museum acknowledges our contribution to mitochondrial donation

The Science Museum in London is the home of award-winning, interactive exhibitions, iconic objects and stories of incredible scientific achievement. And now it’s also home to a new display showcasing the history of mitochondrial donation and the role The Lily Foundation played in changing UK law.

Research
6 August 2024

Mito families get sneak peek at groundbreaking treatment plans

Earlier this year we announced that The Lily Foundation is to play a pivotal role in the creation of a national cutting-edge centre for mitochondrial research. The project is just getting off the ground, and a handful of families affected by the disease had a sneak peek at the plans.

Research
5 August 2024

Funding new research into mitochondrial disease treatments

The Lily Foundation are delighted to announce the investment of almost £100k into a pioneering new project by a team of researchers to investigate the effects of three different treatments on mitochondrial diseases.

Research
19 July 2024

Mitochondrial disease study shows positive interim results

A clinical trial looking to develop an effective treatment for mitochondrial diseases has shown positive interim results and The Lily Foundation are encouraged to hear that it’s been given the go-ahead to continue.

Personal stories Awareness
4 July 2024

A journey through mitochondrial disease

When the debilitating symptoms of his mitochondrial disease began to manifest themselves, Paul struggled to come to terms with the impact on his physical and mental health. But an unexpected friendship, and a discovery of art therapy, have helped him to live with his diagnosis.

Support Events
26 June 2024

This year’s Lily Weekend – the biggest… and best yet!

Last weekend, over 80 families affected by mitochondrial disease came together in Warwickshire for what turned out to be The Lily Foundation’s biggest Family Support Weekend since the event first began. And we know we’re a little biased, but we also think it was our best!

Personal stories Fundraising
25 June 2024

How people power is spreading the word

When his son Jude was diagnosed with mitochondrial disease, like so many other parents Dale had never heard of the condition. But since that day he’s made it his mission to spread the word about our work, doing more than his fair share in the fight against mito.

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