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Action Duchenne

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  • Donate
  • About Us
    • Our Purpose
    • 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
      • Online Group Counselling Programme
    • Recently diagnosed
    • Children and Young People
    • Schools
    • End of Life and Bereavement
  • Annual Conference
    • Save the Date for the Action Duchenne Community Summit 2026 (Previously known as Annual International Conference)
    • Highlights from the Action Duchenne 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
    • Friends of Action Duchenne
    • Upcoming Events and Challenges
    • Give in memory and help us support every family, every time.
    • Organise your own event
    • Fundraising at school
    • Donate by cheque and post
    • Welcome to our 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

Supporting you as the world re-opens

29 June 2020 by Lynnette

A message from the National Director, Florence Boulton Lock-down has been a time of grief for many, losing loved ones at a time when we are unable …

Supporting you as the world re-opensRead More

It’s easy to start fundraising with JustGiving

26 June 2020 by Lynnette

Guide to setting up your page It's quick and easy to set up a Fundraising Page for Action Duchenne. Just follow the steps below: 1.   …

It’s easy to start fundraising with JustGivingRead More

A Life Fulfilled In Everyway (ALFIE)

12 June 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!

10 June 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

9 June 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

29 May 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

29 May 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?

27 May 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

18 May 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

17 May 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

20 April 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

7 April 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

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