After hearing about Lola's brilliant football stadium fundraiser, Dayna couldn't wait to chat to her for the last episode of season four. Lola talks about her grandad's experiences of living with dystonia and how this has affected her, as well as the difficulties of going out and about in society when living with dystonia and her determination to raise awareness about the condition to help her grandad and others like him. 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.dysto ..read more

After hearing about Emma's high flying plans to do a wing walk in aid of Dystonia UK, Dayna was so excited to sit down with her on the podcast. Tune in to hear about Emma's experiences with medication and alternative therapies (including infamous cold dunks!!), the challenges of trying to get people to understand dystonia, and her dream to help others living with the condition. 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 det ..read more

Having met Mark at many Dystonia UK events, Dayna could't wait to have him on the podcast. Tune in to hear about Mark's experiences with his local group and how he came to educate Nicky Campbell on dystonia and how much he loves Sara (without an H) all live on national radio. 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 ..read more

After a few months of trying to get together Dayna and Jason finally got to sit down and record the podcast. Jason reflects on the challenges of living with a chronic condition and how he is finding hope through alternative treatment solutions. By speaking with Dayna, Jason also experiences a transformative breakthrough towards his attitude to dystonia. Not to mention his amazing fundraising experience and how he is eager to learn more about our amazing community. If you enjoy listening to this episode and would like to share your story on our Dystonia Matters podcast, get in touch: ⁠communica ..read more

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