Do you know a Dystonia Superstar, Masked Hero or Young Champion? The 'Dystonia UK Awards' are back! This year, we're reintroducing the classic category 'Dystonia Superstar' but opening it up for a winner from each nation: England, Scotland, Wales, and Northern Ireland! We're also thrilled to announce the addition of a special solo national category for our young champions. And let's not overlook the cherished 'Masked Hero' category, a fan favourite! ?Dystonia Superstar Award? The ‘Dystonia Superstar Award’ is your chance to recognise a superstar in the dystonia community – whether they have dy ..read more

We want to set standards to improve the care children and young people get - and we need your help to make sure we get it right! Dystonia in children can present with pain, affect normal function, and interfere with participation. Ultimately, we know from listening to you, the huge impact dystonia can have on quality of life for your children. Managing the dystonia can be challenging for clinicians and families alike. While there are several medications to help manage symptoms, at the moment there is no strong evidence base to guide their use. Medication choices are currently guided by expert ..read more

Our Director of Fundraising and Communications, Dayna Ferdinandi, joined Ben Boulos from BBC Breakfast, to film a piece raising widespread awareness about dystonia. Yesterday our Director of Fundraising and Communications, Dayna Ferdinandi, joined Ben Boulos from BBC Breakfast, to film a piece raising widespread awareness about dystonia and the challenges faced by those living with the condition, shedding light on the impact it has on individuals and their families. The opportunity came about as Ben had mistakenly thought in an interview with specialist guest (Teresa) that she was shaking her ..read more

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 article, Prof Ian Loram explains the learnings and next steps for turning the proof of concept into a robust clinical tool. Dystonia is a neurological movement disorder caused by incorrect messages from the brain to the muscles. Symptoms for cervical dystonia (CD) include uncontrollable muscle contractions in the neck which cause awkward postures, discomfort, and pain. Following diagnosis, Botulinum NeuroToxin (BoNT) treatment is th ..read more

A big thank you to everyone who took the time to submit a nomination in the Dystonia UK Awards 2023. Reading through all the reasons you gave for shining a light on your heroes and superstars was really heart-warming. Our judging panels have been busy behind the scenes with the incredibly difficult job of narrowing down your nominations to create a shortlist and we're very pleased to announce that voting is now open in all 3 categories!   ? Masked Hero ? ? Dystonia Superstar ?   Popular Podcast  Voting closes Monday 7th August 2023 at ..read more

Over 19,000 people affected by neurological conditions and 100 organisations back Neuro Taskforce petition. Dystonia UK is one of 100+ organisations and over 19,000 people who #BackThe1in6. Joining other neurological charities including Parkinson's UK, The MS Trust and The Brain & Spine Foundation, we supported The Neurological Alliance at the UK parliament in Westminster for the #BackThe1in6 petition hand in event on the 5th June 2023. The event was held in recognition of the 19,000 people across the UK who signed the petition calling for more to be done to improve ser ..read more

Dystonia UK supports the work of researchers and students to help further understand dystonia and its impact on individuals. We work to support research projects in a number of different areas including research into the causes, treatments and management of dystonia. Dystonia UK has a history of working with students on the Clinical Psychology doctoral course at Lancaster University to support their research projects focused on the psychological effects of dystonia. A current study is looking to understand more looking at how coping strategies are used and experienced by people with neck (cerv ..read more

Dystonia UK turns 40! Join us for pizza & a pint or a prosecco as we celebrate the 40th anniversary of Dystonia UK with our fantastic community! In one of a few celebrations up and down the country we'll be partying with live entertainment and fun! When: Friday 30th June, 6:30 - 10pm Where: 'The Main Stage - At night' @ INNSiDE, Newcastle Tickets: £25 per person. 10% discount for members. Tickets must be bought in advance. Published: 14th June 2023 ..read more

Nominate your ‘Masked Hero’ and ‘Dystonia Superstar’! Following the amazing success of the inaugural ‘Dystonia UK Awards’ last year we are thrilled to celebrate members of our dystonia community once again in 2023! Nominate your ‘Masked Hero’ and ‘Dystonia Superstar’ before 23rd June 2023. We will then make a shortlist available for voting, which will include your chance to vote for your most ‘Popular Podcast’ of the ‘Dystonia Matters Podcast’ season 2. The winners of each category will be celebrated in ‘Dystonia Awareness Month’ this September. ? Masked Hero Award ? The 'Masked Hero Award' is ..read more

As Dystonia UK celebrates its 40th year, it’s a valuable chance to reflect on our organisation and the ways in which we support the community. As we plan for the future, we wanted to make sure your voice is heard. We were established in 1983 by a small group of people living with dystonia. Their mission was to “give hope and support to everyone living with dystonia and to create UK and worldwide awareness.” Over the past 40 years how people access information and prefer to communicate has changed significantly. While our mission remains the same, the ways in which we support our community must ..read more