19 episodes

Dystonia UK, the only national charity supporting people with dystonia is delighted to bring you the Dystonia Matters Podcast! Sharing personal stories and talking to members of the dystonia community.

Dystonia Matters Podcast DystoniaUK

    • Health & Fitness

Dystonia UK, the only national charity supporting people with dystonia is delighted to bring you the Dystonia Matters Podcast! Sharing personal stories and talking to members of the dystonia community.

    Dystonia Matters: Jason's Story

    Dystonia Matters: Jason's Story

    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: ⁠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 have for future episodes.

    This show is brought to you by Dystonia UK.

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

    Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications

    Post Production: Heather Pownall of Heather’s Media Hub Ltd.

    • 49 min
    Dystonia Matters: Hayley's story

    Dystonia Matters: Hayley's story

    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.







    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 have for future episodes.

    This show is brought to you by Dystonia UK.

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

    Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications

    Post Production: Heather Pownall of Heather’s Media Hub Ltd.

    • 46 min
    Dystonia Matters: Rebecca's story

    Dystonia Matters: Rebecca's story

    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 being donated to Dystonia UK.

     

    Tune in to explore Rebecca's extraordinary story of resilience and perseverance.

    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 have for future episodes.

    This show is brought to you by Dystonia UK.

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

    Hosted by: Dayna Ferdinandi, Director of Fundraising and Communications

    Post Production: Heather Pownall of Heather’s Media Hub Ltd.

     

    • 52 min
    Dystonia Matters: Claire's story

    Dystonia Matters: Claire's story

    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

    • 50 min
    Dystonia Matters: Katie's Story

    Dystonia Matters: Katie's Story

    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 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

    • 1 hr 1 min
    Dystonia Matters: Beccy's Story

    Dystonia Matters: Beccy's Story

    In episode 2 of the 3rd season of the podcast, Dayna is joined by the fabulous Beccy!
    Beccy who has been diagnosed with hemi-dystonia, has run marathons, been a torch bearer for the 2012 London Olympics and opens up with a brave vulnerability & unflinching honesty about her life.
    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

    • 53 min

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