Dystonia Matters Podcast

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.

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.

This show is brought to you by Dystonia UK.

Follow us on Twitter, Facebook, Linkedin and Instagram @DystoniaUK.

Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications

Post Production: Heather Pownall of Heather's Media Hub Ltd

In this episode we are joined by four fantastic guests who in very individual ways have been raising awareness of dystonia. 

Throughout this podcast our guests shared their personal stories and together we explored the many different ways you can raise awareness. From local support groups to compiling a novel of stories to using social media, we laughed and cried and we are so grateful to them for their honesty and tips. 

Our supporters are the best representatives for Dystonia UK, helping to spread awareness in person and all over social media. They are all champions and we are so lucky to have such a great team!

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

Follow us on  Twitter, Facebook, Linkedin and Instagram @DystoniaUK.

Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications

Post Production: Heather Pownall of Heather's Media Hub Ltd

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 we are so lucky to have such a great team!

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 

Follow us on  Twitter, Facebook, Linkedin and Instagram @DystoniaUK. 

Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications

Post Production: Heather Pownall of Heather's Media Hub Ltd

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 Dystonia Matters Magazine. 

While you may have heard some of their stories before, you've never heard them like this. These parents are their kids biggest cheerleaders in life and they're all dedicated to ensuring that their kids continue to receive the best care possible, as they transition into their adult lives. 

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.

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, while Katie was diagnosed with hers at 16-years-old, and Andy received his diagnosis in adulthood, while on a business trip. Join us to learn more about these three and their journeys.