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World Mitochondrial Disease Week round-up


28 September 2022

World Mitochondrial Disease Week went off with a bang as Lily supporters raised awareness across the country. Check out our round-up of the highlights!

A big THANK YOU to all our friends and supporters who took part in World Mitochondrial Disease Week earlier this month. Once again, you made it a September to remember!

Our amazing mito community pulled out all the stops to raise awareness, with Lily families, supporters, doctors and researchers getting involved around the country. 

Our Light Up for Mito initiative was a big success, with several prominent buildings and landmarks up and down the country going green for WMDW. 

Gateshead Millennium Bridge in Newcastle, Cheshire's Mersey Gateway Bridge, the Shell Centre and University College London were among several high profile sites taking part. Also going green were castles, church spires, local monuments, radio towers and even lighthouses. Talk about shining a light on mito!

Mito experts get behind WMDW

There was strong engagement from our friends in the NHS, with specialist mito teams in London and Newcastle getting involved. Dr Rob Pitceathly and Prof Mike Hanna, Co-Leads for the London Highly Specialised Service for Rare Mitochondrial Disorders, posed with their team for photos outside the green-lit portico of UCL, and shared the following joint statement on the importance of raising awareness:

“Although many primary mitochondrial disorders are individually rare, as a group they are among the most common cause of inherited neurological disease. World Mitochondrial Disease Week represents a fantastic platform to raise awareness of these conditions globally, thereby encouraging further funding for patient support and research aimed at developing treatments. The London Highly Specialised Service for Rare Mitochondrial Disorders is extremely grateful to UCL and the Lily Foundation for helping us contribute towards highlighting mitochondrial diseases during World Mitochondrial Disease Week.”

Taking a stand

A special thank you to those Lily supporters who got behind our Take a Stand initiative, by setting up colourful Lily awareness stands in their local areas. This is a really effective way to educate and inform people about mito – not to mention a great reason to bake some very tasty looking cup cakes!

There was action online too, as our friends at the Wellcome Centre for Mitochondrial Research (WCMR) handed the centre's twitter feed over to The Lily Foundation for an hour-long 'twitter takeover'. We used the opportunity to share impactful messages about our work, and highlight our patient-centric collaborations with NHS mitochondrial services. WCMR's Dr Lyndsey Butterworth commented: 

“By handing over our @MitoResearch Twitter account to The Lily Foundation, and to 10 other patient organisations around the world, we were able to provide a platform to share key messages on a global scale as part of our visionary campaign called Project Pearl. Increasing the profile of mitochondrial disease is crucial for those living with the condition, and is vital to ensure continued funding for the mitochondrial research that provides hope for a cure. We would like to thank everyone who got involved and helped us reach over 31,000 people in one day! This really does show that together we are stronger.”

A team effort

Elsewhere, mito awareness took to the football pitch, as Bristol Rovers FC made The Lily Foundation the club's official charity for a League One fixture against Accrington Stanley. The Lily Foundation appeared on pitch-side advertising screens and in the match program, while a turnstile collection raised over £1,000 and a match-worn shirt was raffled for a further £297. 

Members of the Lily team hosted an informative pre-match Q&A in the hospitality suite, and there was time for a post-match meeting with Bristol Rovers' player of the match, Sam Finley. Sadly it wasn't his team's day, with Accrington scoring the only goal of the match, but it was a definite win for mito awareness! David Bright, Head of Sales at Bristol Rovers, said: 

"When we heard about The Lily Foundation and its cause, we were really keen to offer our support. Liz gave a talk in our hospitality suite, and everyone – 160 people – stopped what they were doing to listen. It definitely had an impact in terms of raising awareness. We were able to raise over £1000 on the day, through donations and the raffle of [Bristol Rovers player] Ryan Loft's shirt, so I think it was a great result all round. We hope we can support the charity again in the future."

A big thank you to everyone at Bristol Rovers FC, and to all who took part in World Mitochondrial Disease Week 2022. Together, we're making a difference!

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