Awareness week 2025 – we put mito firmly on the ma… - The Lily Foundation
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Fighting mito,
finding hope.

Awareness week 2025 – we put mito firmly on the map!

Awareness

26 September 2025

A huge thank you to everyone who got involved in this year’s World Mitochondrial Disease Week. Thanks to our incredible supporters, it’s been our most impactful campaign yet. Together, we reached more people than ever before and helped put mito on the map all over the country.

A green camper van with the words 'putting mito on the map' printed across the side Members of the London mito team standing outside their building wearing green articles of clothing for awareness week The Mansion at Prior Park, Bath lit up green for World Mitochondrial Disease Week A group of people behind an awareness stand for mito week filled with balloons, bunting and cakes Illustrated graphic of a hard-hitting mito fact for awareness week Members of the Beaumont Hospital standing on a staircase wearing green for awareness week A landmark lit up green at night for World Mitochondrial Disease Week A group of medics standing in front of a large screen at the Oxford Mitochondrial Disease Study Day Screenshot of a mito mum's social profile with an 'I'm mito aware' twibbon The castle in Colchester lit up green in the darkness to mark Light Up for Mito Two members of the Oxford mito team standing behind a table with bunting, balloons and Lily mrechandise to raise awareness

From patients and families living with mitochondrial disease to the medics caring for them, the researchers uncovering new treatments, our celebrity supporters, fundraisers and followers on social media – this year’s activities went further than ever before.

The results speak for themselves:

  • Website visits nearly doubled compared with last year, with thousands more people exploring our resources and learning about mitochondrial disease.
  • Our videos were a standout, viewed thousands of times and keeping audiences tuned in from start to finish.
  • Social media engagement soared, with shares increasing by over 75% – a clear sign that personal stories and community spirit really resonate.

Why does this matter?

The more people know about mitochondrial disease, the more we can drive research forward, inspire donations and improve the chances of early and accurate diagnosis by educating both doctors and patients. It also ensures that health policymakers continue to recognise the need for better clinical services. That’s why every single action during Awareness Week – big or small – helped make a difference.

Highlights from the week:

  • Supporters embraced our special awareness twibbon, with almost 250 people proudly displaying theirs – a simple but powerful way to amplify our message.
  • Across the country, buildings and landmarks lit up green to spectacular effect, from Prior Park in Bath to Cardiff Castle, Worcester Guildhall to the Spire Bridge in Sunderland, shining brightly on the Saturday night in support of our cause.
  • Supporters hosted awareness stands across the country, while NHS colleagues at specialist mitochondrial centres lent their backing by lighting local landmarks, taking a stand or sharing content on social media.
  • For the first time we joined forces with fellow UK mito charities to share hard-hitting facts about mitochondrial disease, demonstrating the power of collaboration. Special thanks to My Mito Mission, Noah Jordan Foundation, Leigh Network and The Freya Foundation for helping to spread these important messages.
  • Press coverage was encouraging too, with stories appearing in local media outlets thanks to the efforts of mito families and the Lily team.

And finally, a heartfelt thank you

So that’s it for another year! World Mitochondrial Disease Week is a powerful opportunity for the mito community to unite and raise awareness of these rare disorders. But at The Lily Foundation, our work continues every single day. We’ll keep fighting mito, finding hope and working towards a cure – and we won’t stop until we find one.

Thank you for your continued support.

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