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  • dystonia-awareness-month
  1. Support us
  2. Campaigns
  3. Dystonia Awareness Month

Dystonia Awareness Month

This year for Dystonia Awareness Month, we are back with our fabulous festival vibe! With more landmarks lit up than ever before, webinars, podcasts, picnics and the 'Team on Tour' we can not wait to share our plans with you!

We would love to see you all out and about raising awareness of dystonia in the coming month, in your hoodies and T-shirts or with your coffee cups, water bottles and wristbands. Let’s fill social media with dystonia awareness!

Please tag us @DystoniaUK and #DystoniaAwarenessMonth on all the social media platforms you use and/or send your photos to [email protected] for us to use and share.

If you haven’t got your festival attire yet, be sure to check out our merchandise range in the shop so you can show it off in your photos.

We will be updating this page throughout the month so check back frequently for more resources and activities.

We cannot wait for you all to get involved!

Team on tour

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Over the last year, the thing we've missed more than anything is being out and about with the dystonia community. That's why for 'Dystonia Awareness Month' 2021 we'll be touring parts of the UK!

We'd love to meet as many of the amazing dystonia community as we can while spreading awareness across the country.

During September we'll be visiting Glasgow, Edinburgh, Newcastle, Liverpool, Cardiff, Birmingham, Southampton, Oxford, London and Kent.

If you'd like to meet the team on tour when we're in a city near you then get in touch!

Published: 1st September, 2021

Updated: 4th May, 2022

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Lighting up landmarks in green

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We are lighting up two bridges, the Millennium Bridge in Newcastle and the Royal Border Bridge in Berwick-Upon-Tweed, as well as two Ipsen buildings in Wrexham and Slough!

Know a building that can be lit up? Maybe a local monument, your place of work, or even your very own home! We want to light up the UK with the iconic dystonia green so let us know if you can help! 

Published: 2nd September, 2021

Updated: 4th May, 2022

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Share your story

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Sharing your story can help someone feel less alone, understand a new diagnosis, or provide inspiration and encouragement.

You understand what others are going through and know what the difficulties and successes can be on the journey.

We would love you to share your stories in our 'Dystonia Matters' magazine, on our website, via our podcasts and with our partner organisations.

Email us to get in touch to discuss where to start or send us your story along with a lovely high resolution photo or two. 

We want you to share your story in your own time and your own way, but if you’re wondering about some of the practicalities, we’ve got some handy tips here.

Published: 3rd September, 2021

Updated: 4th May, 2022

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Picnic & Play

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Get your friends, family or even your colleagues together to hold the ultimate picnic!

To help you create the perfect picnic and adventure day out we have created amazing packs for you to purchase, taking your picnic to the next level! Included in these fabulous packs are the options of our brand new turbo frisby, cooler bag or meadow picnic blanket.

Find your ideal pack and make the most of a sunny day away from work... and of course don't forget to send us photos!

Buy now

Published: 4th September, 2021

Updated: 4th May, 2022

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Dystonia Matters Podcast

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Our podcasts are all about sharing your stories and hearing from the community. We know how important it is to hear other people’s stories and know you are not alone. Podcasts allow us to literally share your voices.

Season one of the ‘Dystonia Matters Podcast’ will be concluding at the end of September. Throughout this series, we have been highlighting different ‘Faces of Dystonia’ and we will be sharing even more of your stories with brand new episodes in 'Dystonia Awareness Month'.

Subscribe now on Spotify or Apple Podcasts and all major podcasting platforms.

Dystonia matters and so does your voice, so if you would like to share your story, please pop us an email and a member of the team will contact you.

Published: 6th September, 2021

Updated: 4th May, 2022

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Dystonia Animated

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'Dystonia Animated' is a series of short animations, as part of our 'Reach Out, Reach All' campaign. They focus on “What is dystonia?” in children and how the diagnosis affects their lives.

With help from families and young people with dystonia, we created the first episode which centres around explaining dystonia in a format children and young people can relate to and with language suitable for their age. Episode 2 will be released as part of 'Dystonia Awareness Month'.

Published: 8th September, 2021

Updated: 4th May, 2022

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Dystonia Around The World

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Our #DystoniaAroundTheWorld challenge is set to finish at the end of September, and we need more champions to help us reach our goal of virtually travelling 25,000 miles from Dystonia UK’s HQ around the world and back, and raising £25,000.

Please help us raise global awareness of the condition by signing up to take part!

Published: 8th September, 2021

Updated: 4th May, 2022

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Like, share and repost

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Throughout the whole of September we'll be posting about dystonia, personal stories, events, activities and how to get involved in awareness month.

Please support our work by liking, sharing and reposting to help spread the word that dystonia matters.

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Published: 9th September, 2021

Updated: 4th May, 2022

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Your Dystonia Awareness Month Toolkit

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We will be releasing new resources throughout the month so keep an eye on our social media and keep checking this page for updates!

Downloadable resources

Dystonia Awareness Month A4 posters

Dystonia Awareness Month poster white background Dystonia Awareness Month poster Dystonia Awareness Month poster black background

Social media photo frame

About dystonia infographic

About dystonia infographic

Team Dystonia UK membership infographic

Awareness-raising anagram activity sheet

Downloadable in colour or printer-friendly black and white

Download the answers in colour or download the answers in printer-friendly black and white

Published: 10th September, 2021

Updated: 4th May, 2022

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Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered as a charity in England and Wales (1062595) and in Scotland (SC042127)


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