Mito awareness week – spreading the word far and wide, loud and clear

27 September 2023

A huge thank you to everyone who got involved in events before and during World Mitochondrial Disease Week earlier this month.

From Lily families and supporters to doctors and researchers, you all did your bit to put mito on the map and help make this year’s awareness week bigger and better than ever before!

Just as busy as our supporters were the adventurous bears who took part in our Share a Bear campaign. You helped them spread their message to destinations as far away as the south coast, Yorkshire and southern Scotland, and they enjoyed a variety of adventures from riding steam trains and exploring beaches to visiting theme parks and museums.

One of our furry friends even ended up at the police station – helping on the night shift, not under arrest! – while several more, obviously fed up with the Great British weather, headed overseas to more exotic locations as far afield as Dublin, Cyprus and Norway.

And a big shoutout to those of you who set up a colourful Lily awareness stand in your local area. This is always a great way to talk to people about mito, especially when accompanied by cakes or sweeties to entice them!

The Light Up for Mito initiative on Saturday was also a big success, with a number of prominent buildings and landmarks from north to south and east to west getting involved. Liverpool’s Royal Liver Building, the Gateshead Millennium Bridge, the Mersey Gateway Bridge, University College London’s Portico and the Wallace Monument in Stirling were among several high-profile sites taking part. We also saw more castles, churches, local monuments, radio towers and even lighthouses going green than in any previous year. What an illuminating exercise!

Naturally, we turned to social media to help spread the word too. As well as some hard-hitting mito facts and our ‘I am mito aware’ twibbon, which proved very popular, mito patient Amy put together an Instagram takeover for us where she candidly shared her experiences of the disease, snapshots which were really well received.

Our friends at the Wellcome Centre for Mitochondrial Research in Newcastle handed their X, formerly Twitter, feed to us for an hour-long takeover. We seized the opportunity to share some key messages about who we are and the importance of what we do.

You all did your bit to put mito on the map and help make this year’s awareness week bigger and better than ever before!”

On Saturday morning Team Hope did a Lily Foundation takeover of the parkrun at Seven Fields in Swindon. The team did a fantastic job of raising awareness and funds amongst the 161 eager parkrunners, joggers and walkers who turned up on a beautifully misty autumn morning. They even laid on a cake sale afterwards for the hungry athletes! Organiser Caroline, whose daughter Hope, 14, has mito, praised the support of the event: “It never fails to amaze and humble me that when we ask for your support, the local Swindon community show up. Every time!”

And still on the sporting theme, on Sunday lots of eager Lily supporters took part in The Butterfly Run, an accessible race organised by rare disease charity Cure EB which took place at the Queen Elizabeth Olympic Park in London. A special mention must go out to Lily participants Freddie and Theo who both completed the 1k race, Theo in his wheelchair and Freddie with his walking frame on his 8th birthday! It’s the first time Lily supporters have taken part in the event, but it’s safe to say we’ll be back again next year.

In exciting press coverage earlier in the week, BBC Points West ran a story which was also shared on the BBC News website about Lily team member Sarah and her motivations for helping families affected by mito. Sarah lost both her daughters to the disease and began fundraising for The Lily Foundation back in 2018 before joining the team as corporate fundraiser.

An interview with our Science & Patient Engagement Officer, Katie, was published online and in The Guardian’s health supplement during the week. Katie talked about the dedicated patient community The Lily Foundation have built, how we champion patient advocacy and how growing research is giving patients hope for future treatments.

And, of course, the icing on the cake was the news that our founder and CEO, Liz, had been recognised with a National Lottery Local Health Hero award at The Sun’s Who Cares Wins Awards the very same week. The star-studded ceremony was broadcast on Channel 4 on the Sunday evening – what a fantastic way to round off an incredible week!