Putting mito on the map
The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Putting mito on the map

Awareness

30 September 2024

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.

The Shell Centre and London Eye lit up green at night with the Thames in the foreground Four ladies in Lily t-shirts seated behind a table with leaflets and balloons Illustration of a billboard with a hard-hitting fact about mito in children Prior Park Mansion in Bath lit up green in the darkness Three people standing around a display of Lily foundation balloons and bunting A screenshot of The Lily Foundation's Facebook feed The Millennium Centre in Wales lit up green to raise awareness of mito Three people standing in front of a Lily banner holding merchandise A lady standing in front of the Portico Building at UCL which is lit up green A group of schoolchildren standing together outside wearing Lily t-shirts An awareness stand of balloons and bunting for The Lily Foundation charity

From the patients and families directly affected by mitochondrial disease to the medics caring for them; from the researchers working tirelessly to uncover new treatments to our celebrity supporters plus all of our fundraisers and followers on social media; here are the numbers that have helped spread the word about incurable mitochondrial disorders this September:

  • 8 – hard-hitting facts about mitochondrial disease that were shared hundreds of times
  • 13 – football stadiums visited by celebrity supporter Kevin Day as part of his 63-mile ‘March of the Day’ across London
  • 30 – people who signed up to Take a Stand against mito
  • 224 – supporters who changed their social media profile pic for a twibbon
  • 100s – monuments that were lit up green across the globe
  • 1000s – followers who engaged with us on social media

Phew! What a week it was. This year’s twibbon design proved popular on our social channels, as did our revamped mito facts, which were downloaded and shared multiple times. We saw increased engagement across all our channels, and a big uptick in traffic to our website, in particular the awareness week and ‘March of the Day’ pages, all encouraging steps in our mission to spread the word about rare mitochondrial diseases.

Going green to spread the word

Buildings and landmarks across the country were lit up green to spectacular effect. From the UCL Portico Building to Worcester Royal Hospital, from Cardiff Castle to the Jumbo Water Tower in Colchester, monuments shone proudly in support of our cause.

A number of followers up and down the nation did their bit by setting up awareness stands during the week. We were well supported by our friends in the NHS at the specialist mitochondrial centres too, whether that was through getting a local building or landmark lit up green, taking a stand or spreading the word on social media. Fellow charities Leigh Network and My Mito Mission also had busy weeks pulling out all the stops to talk about mitochondrial disease.

Getting mito in the news

Press coverage across the week was heartening too. There were stories published in local press outlets all over the country thanks to the coverage secured by mitochondrial disease patients and their loved ones. That’s before we even get to the interviews and articles about higher profile events such as Kevin Day’s football fundraiser. Kevin’s already raised over £7k but there’s still time to sponsor him, and you can read all about his challenge too.

So that’s it for another year! World Mitochondrial Disease Week is a fantastic opportunity for all of us within the mito community to come together and increase awareness about rare mitochondrial diseases amongst the general public. But here at The Lily Foundation we’ll keep doing this week after week, year after year. Because we’ll keep fighting mito and finding hope for everyone affected by this devastating condition until we find a cure – but we can’t do that without you. Thank you for your continued support.

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