There’s plenty going on in the mitochondrial disease community, and you can learn all about our work and the support we offer, and read the latest news articles and blogs from across all areas of our charity here.
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Awareness
2 September 2024
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
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.
Awareness
9 August 2024
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?
Research
Awareness
8 August 2024
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
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.
Personal stories
Awareness
6 June 2024
We know mitochondrial disease inspires incredible bravery in patients and their families, dedicated fundraising in our supporters and pioneering work in the research lab. But this is the first time we’ve seen the disease inspire the conception of a beautiful piece of art.
Research
Awareness
17 May 2024
The Lily Foundation were delighted to support a recent Clinical Study Day that gave us the opportunity to talk to an audience of healthcare professionals and raise awareness of the many ways we’re there for patients and families affected by mitochondrial disease.
Research
Awareness
16 May 2024
Those with a thirst for scientific knowledge attended events across the UK as part of the Pint of Science Festival. Lily’s Research Manager Maria went to Darlington to talk about the unique challenges faced by mitochondrial disease patients and how our charity is helping.
Personal stories
Awareness
23 April 2024
Often taking on a charity challenge means attempting a one-off event such as running a race or climbing a mountain. But once wasn’t enough for Lily supporter Darren, who took on the incredible feat of running a half marathon every day for a month.
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