Parents Emma and Gareth share the story of their incredible eight-year-old daughter, Hayley, who has become the first in the world to undergo a new form of advanced deep brain stimulation ..read more

For the first episode of Season Four, Dayna is joined by the wonderful Rebecca! Rebecca discusses her life's unexpected shift from an active student midwife to life full-time in a wheelchair. Amidst this transition, she created a new path as an accomplished author, creating a range of children’s books and young adult titles. She also opens up about the heartfelt encounter that led to meeting her husband and offers insights into the perspective her children hold of her. In October 2023, Rebecca released a poetry collection, 'Freefall Dysfunctionally Me', with all royalties from the collection b ..read more

In our latest episode we were joined by the super talented Paralympic Boccia champion - Claire Taggart. Hear Claire talk about inclusion in sport and how she's using her voice to raise awareness of dystonia. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: communications@dystonia.org.uk Visit ⁠www.dystonia.org.uk⁠ for further information and details on becoming a Dystonia UK member. Email: ⁠communications@dystonia.org.uk⁠ for any questions or topic suggestions you may have for future episodes ..read more

In this episode Katie joins Dayna to chat about having an incredibly busy home life! How dystonia has changed her life beyond measure affecting her confidence and friendship groups, Life in a wheelchair, meeting people with the condition for the 1st time at Dystonia Matters Live 2023 and how much of a relief that was and how she is taking control of her future. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: communications@dystonia.org.uk Visit www.dystonia.org.uk for further information and details on bec ..read more

Dystonia Superstar Award winner, Kimberley, stopped by the podcast to chat to Dayna about her dystonia story. They talked about about Kimberley's surprise at winning one of the Dystonia UK awards after a nomination from her mum (which she forgot doing!), her journey to getting a diagnosis, meeting her husband and becoming a mum. Contact Information Visit www.dystonia.org.uk for further information and details on becoming a Dystonia UK member. Email: communications@dystonia.org.uk for any questions or topic suggestions you may have for future episodes. This show is brought to you by Dystonia UK ..read more

In this episode we are joined by three of our amazing fundraising champions as they identify the dual purpose of fundraising and awareness raising. Throughout this podcast we explore the personal stories of our fundraisers who have taken on their own challenges and discovered the many benefits of fundraising. Being spurred on as a way to give back to the charity, help raise awareness of dystonia, and process news of a long awaited diagnosis. Our fundraisers are the best representatives for Dystonia UK, helping to spread awareness in person and all over social media. They are all champions and ..read more

Parents and carers are an essential part of the dystonia community, so in this episode we're introducing you to three phenomenal parents and their journey's helping their kids navigate their conditions. You'll meet Sylvia, Neil and Julie - parents to three amazing young adults, who you may recognise from some of our past work!  Sylvia's daughter Tegan is one of our stunning ambassadors, while Julie's daughter Katie is heavily involved in Dystonia UK's activities, even joining us on our first podcast herself! Meanwhile, Neil's son Callum graced the pages of our most recent issue of Dystoni ..read more

For the second episode of our premiere podcast, we're sharing lifestyle advice from Dystonia UK Ambassador, Gemma Stevenson and Nick Morgan. In this episode, these familiar faces tell us how they maintain extremely active lifestyles and fast-paced careers, while making them work with their dystonia. Tune in and find out how these two have adapted to best suit their needs and hear about their journeys to discovering how to make those changes. Please like and share the podcast to help us reach even more people and grow awareness of dystonia ..read more

So what exactly is dystonia and why should you care about it? Dystonia is the third most common neurological movement disorder in the UK - behind Parkinson's and Essential Tremor, however many members of the dystonia community struggle to receive the support they need due to the limited public knowledge of their condition.  So let's change that!  In our first episode, you'll meet three members of the dystonia community, Louise, Katie and Andy. Each of them has a different type of dystonia and discovered it at a different point in their lives.  Louise has had hers since birth, wh ..read more

In this episode of the Dystonia Matters podcast, Dayna and Luca got to sit down and have a chat about how it was growing up with dystonia, having deep brain stimulation surgery, and what it is like now being 15, taking exams and having a long term condition. We have watched Luca grow up and have heard his story through his mum's eyes. It was a pleasure to hear it in his own words and see how much raising awareness means to him. Please note the sound quality in some parts of the recording are not perfect. Contact Information Visit www.dystonia.org.uk for further information and details on beco ..read more