Mito community pulls out the stops for World Mitoc… - The Lily Foundation
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Fighting mito,
finding hope.

Mito community pulls out the stops for World Mitochondrial Disease Week

Awareness

24 September 2020

The word on the street was 'mito' as people around the UK joined The Lily Foundation in marking World Mitochondrial Disease Week 2020 with green lighting, fundraisers and more.

Despite COVID-19 restrictions making it harder to organise events, the UK mito community got behind the global initiative, held annually to raise awareness and drive efforts to find a cure.

Homes, schools, workplaces, hospitals, monuments and municipal buildings around the country lit up green to raise awareness. One of the most high profile was Mersey Gateway Bridge, which lit up green in memory of Sebby Streete, who was aged five when he died from a mitochondrial disease in 2017.

As well as getting involved in Light Up Green, Lily Foundation supporters marked WMDW 2020 with fundraising events online and in local communities, raising thousands of pounds to help improve the lives of those affected by mitochondrial disease.

One stand out event was a Coronation Street-themed fundraiser organised by Lia Holmes, mum to three-year-old twins Jeremiah and Emmanuel, who play Oliver Battersby, a child diagnosed with mitochondrial disease on the ITV soap.

Mito facts were shared widely on social media, and visits to the charity's website soared by over 50% throughout the week and beyond. Many of the visits were from new users, and the most visited sections of the site were those giving information about mitochondrial disease.

Liz Curtis, CEO of The Lily Foundation, said she was encouraged by the positive response to this year's World Mitochondrial Disease Week. "Given the situation with COVID we were expecting less noise around the week than usual, but the response was really encouraging," she said. "The spirit and determination of the mito community is really something special. We're truly grateful to everyone who got together to help raise awareness."

The surge in awareness comes at a time when mitochondrial disease is in the public eye more than usual thanks to the Coronation Street storyline about the disease. The Lily Foundation is working to maximise this exposure with its Mito is on My Street campaign.

See our work in action

Being diagnosed with mitochondrial disease can be not only a frightening and upsetting time, but it can also be very lonely. Because mito is so rare, sometimes friends and family just don’t understand, so it’s hard to find people who are in the same situation to talk to, to share hopes and fears with, and find support.

That’s why The Lily Foundation exists.

Watch PhD student Bal’s story about her mitochondrial disease diagnosis, and how The Lily Foundation helped to give her a voice.