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  • About Us
    • Our Purpose
    • Our Strategy
    • What we do
    • Our Impact
    • Our team
    • Work For Us
    • Volunteer
    • The DMD Registry
    • Action Duchenne Policies
  • Get Support
    • Support Calendar – What’s On
    • Register for Support
      • Time Out – A Space for Mums
      • Dads Against Duchenne
      • Grandparents Together
      • Open Space
      • Group Counselling Programme
    • Recently diagnosed
    • Connect with Others
    • Support for 8-14 yrs ‘Turning Point’
    • Support for 14-25 yrs ‘Yes I Can’
    • Schools
    • Siblings
    • End of Life and Bereavement
  • AD Annual International Conference
    • Highlights from the Action Duchenne Conference 2025
    • Action Duchenne Annual International Conference 2025
  • News, Webinars and Blogs
    • News
    • Webinar Series 2025
      • Webinar Series 2025
      • Webinar recordings
    • Bite-Sized Duchenne Science Live
      • Facts about Duchenne muscular dystrophy
      • Signs and Symptoms of Duchenne Muscular Dystrophy
      • Diagnosis of Duchenne Muscular Dystrophy
      • Crucial Genetic Terminology
      • Genetics – Blueprint of Duchenne Muscular Dystrophy
      • How is Duchenne Muscular Dystrophy Inherited?
    • Hear From Our Community
  • Support Us
  • Runner Hub

Hear From Our Community

Our community is at the heart of our work. Read our blogs to find out more about the many aspects of a journey with Duchenne muscular dystrophy directly from those who are living it.

Have you got a story to tell? We’d love to share it – please get in touch to find out more: lizzie.cox@actionduchenne.org

You are here: Home / Hear From Our Community

Blue Monday Blog: Hear from Victoria, our Fundraising Officer and Duchenne Mum

January 21, 2026 by Lizzie Cox

Written by Victoria Edwards, Action Duchenne's Fundraising Officer and mum to Dougie (who lives with Duchenne) and Allie. Feeling Blue "This …

Blue Monday Blog: Hear from Victoria, our Fundraising Officer and Duchenne MumRead More

“Making contact with Action Duchenne provided a lifeline”

December 18, 2025 by Lizzie Cox

"Making contact with Action Duchenne provided a lifeline": Find out why Ben Dolling decided to run the London Marathon dressed as a parrot! Harry …

“Making contact with Action Duchenne provided a lifeline”Read More

The Power of Shared Experience: “Honestly, it would’ve been a much harder road without having joined this group.”   

December 12, 2025 by Lizzie Cox

Action Duchenne have monthly online meet-ups for Duchenne dads, mums and grandparents, facilitated by our Family Support Officers and designed to …

The Power of Shared Experience: “Honestly, it would’ve been a much harder road without having joined this group.”   Read More

In Loving Memory of Christopher Whittaker 

November 1, 2025 by Victoria Edwards

Gemma held a fundraiser in memory of her incredible brother, Christopher Whittaker, who sadly passed away in November 2023 at the age of 28 due to …

In Loving Memory of Christopher Whittaker Read More

Guest Blog: Birthday Boy

September 6, 2025 by Lizzie Cox

By Jack Waddington We are pleased to feature a very special guest blog for World Duchenne Awareness Day 2025. This blog has been written by Jack …

Guest Blog: Birthday BoyRead More

In memory of Leon Thorn

September 1, 2025 by Victoria Edwards

Leon’s life was full of courage, laughter, and love. Though he lived with Duchenne Muscular Dystrophy, it never defined him. Leon was brave, …

In memory of Leon ThornRead More

Guest Blog: Duchenne Parents Karen and Jamie Thompson share their experience of attending the Action Duchenne Annual International Conference

July 24, 2025 by Lizzie Cox

Guest Blog: Duchenne Parents Karen and Jamie Thompson share their experience of attending the Action Duchenne Annual International …

Guest Blog: Duchenne Parents Karen and Jamie Thompson share their experience of attending the Action Duchenne Annual International ConferenceRead More

The Heart of Care

June 17, 2025 by Lizzie Cox

The Heart of Care We have had some key reminders of what we are working towards as a charity over the last few weeks. Volunteer’s Week (2nd - 8th …

The Heart of CareRead More

Mental Health Awareness Week: Alex’s Journal

May 16, 2025 by Lizzie Cox

Written By Alex Berbank 15 Minutes a Day I've really enjoyed getting into the frame of mind to look at my mental health. Before this week I …

Mental Health Awareness Week: Alex’s JournalRead More

Mental Health Awareness Week: Alex’s Journal

May 15, 2025 by Lizzie Cox

Mental Health Awareness Week Journal, Written by Alex Berbank Watch Alex's Vlog for Mental Health Awareness Week Thursday's Update: Meditation …

Mental Health Awareness Week: Alex’s JournalRead More

Mental Health Awareness Week – Alex’s Blog

May 14, 2025 by Lizzie Cox

Written by Alex Berbank Wednesday: Getting Into The Swing of Things The changes yesterday were about removing phones from certain times in the …

Mental Health Awareness Week – Alex’s BlogRead More

Mental Health Awareness Week: Alex’s Journal

May 13, 2025 by Lizzie Cox

Written by Alex Berbank Day 2: A Collection of Little Things It’s day 2 now and yesterday I thought it was a really good start. As I said last …

Mental Health Awareness Week: Alex’s JournalRead More

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