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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 going with a festival vibe so you can expect lots of drop-in events, personal stories and social media activity plus on the main stage, our conference weekend #DMDigital is rounding out the month!

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 wrist bands. 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 new 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!

Lighting up landmarks in green

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1st - 7th September: We have the Millennium Bridge, Newcastle, once again going green.

7th - 21st September: Ipsen’s manufacturing site in Wrexham, Wales, is lighting up green for Dystonia Awareness Month, with a large banner outside highlighting dystonia. 

Do you have a local landmark lighting up green? Let us know and send us a picture to [email protected]

Published: 1st August, 2020

Updated: 31st August, 2020

Author: Bernie McMahon

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Tea with the team

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We would love to say hello and get to know you better so we are hosting informal drop-in events throughout September.

Every Wednesday, between 11am and 12pm, you can join us for a cuppa over Zoom. Just follow this link and be sure to have your beverage ready :)

We may even have a fun ‘festival outfits’ competition so if you haven’t already, be sure to grab some merchandise from our shop to have on hand for the calls.

Published: 2nd August, 2020

Updated: 31st August, 2020

Author: Bernie McMahon

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Socially distant garden parties

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This idea came directly from some of our amazing supporters who wanted to socialise while helping raise funds and awareness for dystonia.

Many of us have missed seeing people we care about during lockdown, and what better way to start socialising again than getting together with your friends and family, in a safe and socially distanced way, for some fun!

Be sure to have your Dystonia UK merchandise at the ready, those drink bottles really do look fantastic in photos!

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.

We love seeing what you get up to while raising dystonia awareness in your local community!

Published: 4th August, 2020

Updated: 31st August, 2020

Author: Bernie McMahon

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Go for gold

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Join virtual exercise classes led by Gemma Stevenson, ParaCheer gold medalist, where she will be focusing on wheelchair appropriate exercises.

We are still confirming dates and times with Gemma, so check back soon for an update!

Published: 5th August, 2020

Updated: 31st August, 2020

Author: Bernie McMahon

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Dystonia Matters Digital

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The main event, our #DMDigital conference, takes place at the end of the month and you can find out more about the exciting programme we have prepared for you on the dedicated conference page.

Published: 6th August, 2020

Updated: 31st August, 2020

Author: Bernie McMahon

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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: 7th August, 2020

Updated: 31st August, 2020

Author: Bernie McMahon

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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

Social media photo frame

About dystonia 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: 8th August, 2020

Updated: 11th September, 2020

Author: Bernie McMahon

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Research update

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A clinical tool for real-time analysis and visualisation of cervical muscles for cervical dystonia

Dystonia UK was pleased to award seed funding in 2016 to Professor Ian Loram and his team at Manchester Metropolitan University for their research project. In this video, Dr Christopher Kobylecki describes the project and what they hope it will mean for the future diagnosis and treatment of people with cervical dystonia.

Current findings in task specific dystonia

As part of Dystonia Awareness Month we want to shine a light on the important research taking place up and down the country. In this video, London based Dr. Anna Sadnicka, neurologist and researcher talks us through current findings in task specific dystonia.

Published: 29th September, 2020

Updated: 16th October, 2020

Author: Bernie McMahon

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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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