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finding hope.

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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
19 December 2024

Reflecting on a year of progress and hope

As we reach the end of 2024, our Founder and CEO, Liz Curtis, reflects on a year filled with notable achievements, inspiring stories and unwavering support from the mitochondrial disease community. Read her review of the last 12 months.

Awareness
30 September 2024

Putting mito on the map

A massive thank you to everybody who got involved in this year’s awareness campaign as part of World Mitochondrial Disease Week. A host of activities took place up and down the country thanks to so many of our supporters embracing our mission to put mitochondrial disease on the map.

Events Awareness Fundraising
25 September 2024

‘March of the Day’ raises awareness and funds to fight mito

Last week comedian Kevin Day embarked on a mammoth ‘March of the Day’ challenge, walking 63 miles across London via thirteen football grounds. His aim was to spread the word about mito during global awareness week, but would his feet hold up and would he make it all the way? Find out more…

Awareness
20 September 2024

‘Light Up for Mito’ on Saturday 21st September

Every September, hundreds of buildings around the world light up green for World Mitochondrial Disease Week. Why not help us put mito on the map this year by asking a building or landmark in your local area to take part?

Personal stories Awareness
17 September 2024

Raising awareness of mito in memory of Sophie

When they heard the heart-breaking news that their young pal Sophie had passed away from mitochondrial disease, a group of schoolchildren set out to honour their friend and raise awareness of the genetic condition which so many people are still unaware of.

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.

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.

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