As another unpredictable year draws to a close, Dystonia UK reflects on a busy year of activities, while eagerly looking forward to the potential opportunities of the New Year.
Virtual activities have continued with great strength. At the time of writing, we have provided 6 ‘Reach Out, Reach All’ webinars, including one live from Scotland, the first series of our Dystonia Matters podcast, a digital conference for kids, carers & families, and many online support group meetings. They have been an invaluable opportunity to continue connecting the UK dystonia community and we hope to continue into 2022.
In a year while so much still had to take place online, it was a real highlight as part of Dystonia Awareness Month 2021 for the team to hit the road with their ‘Team on Tour’ across the UK. From Edinburgh (Scotland) to Kent (England), and from Wrexham (Wales) to Oxford (England) we certainly made the most of being able to travel again! We really appreciated being able to connect with our amazing community in person once again and are so grateful to all of those who came out to meet us on our travels.
As part of the tour, we were thrilled to launch the second episode of ‘Dystonia Animated’, a short animation series designed for kids, carers & families to help support in all aspects of life living with dystonia. Episode two, ‘Charlie at the children’s hospital’ follows Charlie as he visits his regional hospital for the first time and takes a glimpse into his life at home and follows on from ‘Dani explains dystonia’ where we meet Dani & Charlie who both have dystonia. The 2 episodes have now reached an incredible 1,000,000 people and counting!
We were also lucky enough here in the UK to return to some normality and be invited back again to cheer on our fantastic fundraisers at challenge events in person! The buzz of the Great North Run in Newcastle, England, felt even more special after so long. We were equally
excited to bring back our very own virtual awareness and fundraising campaign ‘Dystonia Around the World’ following its hugely successful debut in 2020. This year, our amazing champions baked, cycled and learnt new languages all in a bid to collectively travel 25,000 miles, the distance around the world, to raise awareness of dystonia. They smashed their goal travelling 25,075 miles and raising an incredible £16,461!
On a theme of smashing goals, one member of our amzing community went above and beyond, bringing home a silver AND gold medal from the Paralympics. We are of course referring to our incredible patron, Tully Kearney, who not only came 2nd in the Women’s 200m Freestyle S5 and 1st in the Women’s 100m Freestyle S5 representing GB but also broke her own world record! Tully was very open about her dystonia in the media and used the platform to help raise vital awareness of how dystonia can severely impact life.
We know that life with dystonia isn’t always easy, and as we enter 2022, just like our sister charities, we will continue to be there for the community. To help make this happen we’re asking everyone in our community to donate £1 to support our work. We aim to raise £100,000, one pound for every person thought to be affected by dystonia in the UK. According to the European Brain Council though, there are more than 500,000 people living with dystonia across Europe, and if every one of them donated £1 we could do so much more including support of vital dystonia research.
Please donate £1 today to support the dystonia community, thank you. www.DonateOnePound.org #JustOnePound
Victoria Wareham
Director of Operations and Development, Dystonia UK
