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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
    • In-Person Support Events
    • Register for Support
      • Time Out – A Space for Mums
      • Dads Against Duchenne
      • Grandparents Together
      • Open Space
      • Group Counselling Programme
    • Recently diagnosed
    • 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 2026
    • 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

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

Halloween Hamper winner announced!

October 1, 2022 by Victoria Edwards

We are pleased to announce the winner of our Halloween Hamper Competition is David Pitts! "My daughter Molly and her fiancée found out their son …

Halloween Hamper winner announced!Read More

Yes I Can So Far……

September 23, 2022 by Lizzie Cox

Blog written by Lizzie Deeble | Project Engagement & Support Assistant | Duchenne Mum Yes I Can is our pilot transition programme, put together …

Yes I Can So Far……Read More

Thank you to Oakley C of E Combined School

September 20, 2022 by Victoria Edwards

Our Support and Community Fundraising Officer and Duchenne parent Victoria Young went into her children's school last week to give an assembly to …

Thank you to Oakley C of E Combined SchoolRead More

Finding Hope after a diagnosis by Dr Jo Griffin

September 20, 2022 by Victoria Edwards

Dr Jo Griffin is a parent carer, psychologist and researcher interested in the emotional wellbeing of parents of disabled children. Her book 'Day by …

Finding Hope after a diagnosis by Dr Jo GriffinRead More

Exciting announcements

September 7, 2022 by Lynnette

Florence Boulton's blog - National Director World Duchenne Awareness day 2022 On the 7th September (7/9 a nod to 79 exons on the dystrophin …

Exciting announcementsRead More

On the ground at the Great British Beer Festival

September 6, 2022 by Lynnette

Blog by Lynnette Ellison, Marketing & Support Officer | Duchenne Parent “All staff and volunteers can remove their hi-vis… the festival is now …

On the ground at the Great British Beer FestivalRead More

The CAMRA Great British Beer Festival

August 18, 2022 by Lynnette

From 2-6 August groups of Action Duchenne volunteers donned their blue AD t-shirts, grabbed  their collection buckets and took London Olympia by …

The CAMRA Great British Beer FestivalRead More

Capturing highs and lows

August 18, 2022 by Lynnette

Blog by Florence Boulton, National Director Invitation to Action Duchenne International Conference 2022 ‘Educating, enabling and including’ is …

Capturing highs and lowsRead More

Barrie, Christine and Stephen share their 5 days in Krakow with us.

August 12, 2022 by Samantha

We had a fantastic time in Krakow through Enable Holidays. We stayed in Hotel WYSPIANSKI room 109. This was a fully accessible room with a massive …

Barrie, Christine and Stephen share their 5 days in Krakow with us.Read More

Insights from a Duchenne Grandad

July 20, 2022 by Lynnette

Recorded at Science on Tour 2022 in Manchester. More about the workshops The Duchenne Science on Tour events are engaging, informal, free …

Insights from a Duchenne GrandadRead More

A postcard from Florence

July 7, 2022 by Lynnette

This past fortnight, Florence, our National Director has joined Mehreen and Alex at the Science on Tour workshops in Birmingham and Newcastle. …

A postcard from FlorenceRead More

Seizing control empowering adults by transforming transition

June 23, 2022 by Lynnette

Blog by Florence Boulton, National Director Last week I had the opportunity to join our first session in the ‘Yes I can’ transition to adulthood …

Seizing control empowering adults by transforming transitionRead More

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