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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

A Life Fulfilled In Everyway (ALFIE)

June 12, 2020 by Lynnette

By Duchenne Dad, Kieron Sales Hello again! First of all I’d just also like to say a big thank you to everyone that has taken time to read my …

A Life Fulfilled In Everyway (ALFIE)Read More

80s quiz night raises over £720!

June 10, 2020 by Lynnette

Sam and Lynnette joined 30 other 80s fans on Lizzie Deeble's 80s quiz night on Friday. It was a great night, with lots of laughs and brilliant …

80s quiz night raises over £720!Read More

Uncle Matt’s 100km challenge

June 9, 2020 by Samantha

Matt's story; I will be running 100km (62.13 miles) to raise money for Duchenne research. The research carried out will hopefully slow the …

Uncle Matt’s 100km challengeRead More

Shining a spotlight on Nick Heathcote

May 29, 2020 by Samantha

We are delighted to share Nick's story, where he talks about his 100 mile challenge and the incredible young man who inspires him. My story My …

Shining a spotlight on Nick HeathcoteRead More

Hope, music and making things happen despite Duchenne

May 29, 2020 by Lynnette

By Alex James Hello everyone, I hope you are all very well. This vlog was specially requested by Action Duchenne of me in the flesh, …

Hope, music and making things happen despite DuchenneRead More

Things like this dont happen….do they?

May 27, 2020 by Samantha

by Kieron Sales It's June 2018, I'm in Manchester with my wife, Louise. She's doing a bit of clothes shopping and trying some outfits on. I …

Things like this dont happen….do they?Read More

2 Years since the Diagnosis: Positive Experiences

May 18, 2020 by Samantha

By David Taylor. In May 2018, our son Edward (who was 2 ½ at the time) was diagnosed with Duchenne Muscular Dystrophy. I have struggled with many …

2 Years since the Diagnosis: Positive ExperiencesRead More

Staying active during lockdown

May 17, 2020 by Samantha

By Daniel Miller Since I was small, I have always been fascinated by history and have enjoyed visiting museums, with lots of great museums and …

Staying active during lockdownRead More

One point at a time, that’s the idea

April 20, 2020 by Lynnette

By Bryan Purdue Hi everyone, hope you are all well and safe! I wanted to discuss what’s happening in the world from my point of view. …

One point at a time, that’s the ideaRead More

Fundraisers adapt training during COVID-19

April 7, 2020 by Lynnette

Jonathan and Mike are two keen cyclists who decided to take on a 360km tour round the regional offices of their company, Taylor Wimpey! Inspired …

Fundraisers adapt training during COVID-19Read More

Helping you through COVID-19

April 6, 2020 by Lynnette

Support and resources for our Duchenne community A message from the National Director, Florence Boulton With the impact of COVID-19 on our …

Helping you through COVID-19Read More

#DAY18OFISOLATION

March 23, 2020 by Lynnette

A blog by Duchenne Mum - Ashley 18 days ago I made the decision for my family to take everyone out of school/nursery, some may think I was a little …

#DAY18OFISOLATIONRead More

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