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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

Duchenne Dad to pull tyre for 24 hours

2 July 2021 by Lynnette

A resounding good luck and thank you to serial fundraiser and Duchenne Dad, Lex Ellison who is taking part in the Endure 24 running challenge in Leeds …

Duchenne Dad to pull tyre for 24 hoursRead More

Giving back in honour of Thomas

25 June 2021 by Victoria Edwards

When Thomas was around 7 years old, Adam remembers him having his appendix out. Adam arranged for a card to be signed by the whole school to wish him …

Giving back in honour of ThomasRead More

Unfurling after the storm

25 June 2021 by Lynnette

Before I start my usual blog this month, I wanted to acknowledge a Duchenne family who have been through immeasurable devastation this week. On behalf …

Unfurling after the stormRead More

Duchenne siblings, we see you

16 June 2021 by Lynnette

A blog by Lyndsey Kaye, Duchenne Mum "Today is my eldest son’s 15th birthday, and it has made me reflect somewhat and come to a bit of a …

Duchenne siblings, we see youRead More

Dad completes amazing endurance event challenge for Action Duchenne

7 June 2021 by Victoria Edwards

Dan Brown has been running endurance events since January last year to raise money for Action Duchenne. On 5th June he completed his last endurance …

Dad completes amazing endurance event challenge for Action DuchenneRead More

Edinburgh Marathon ‘Running for a cure’

27 May 2021 by Victoria Edwards

On Sunday 30th May Ian is running the Edinburgh Marathon for Action Duchenne. Ian has been inspired to run 26.2 miles after seeing the challenges …

Edinburgh Marathon ‘Running for a cure’Read More

Re-emerging from lockdown

26 May 2021 by Lynnette

by Florence, National Director The past 18 months in lockdown have been undoubtedly difficult for most and devastating for many. What has come out …

Re-emerging from lockdownRead More

Edinburgh Marathon ‘Our run for Ben’

25 May 2021 by Victoria Edwards

I took up running, as a kind of therapy, shortly after Ben died.  I was kind of cajoled on by colleagues who had run the London Marathon in …

Edinburgh Marathon ‘Our run for Ben’Read More

Duchenne Nana walks 100 miles

21 May 2021 by Victoria Edwards

A big congratulations to Linda Smith for completing her 100 mile walking challenge this week! She set herself the challenge to raise money for Action …

Duchenne Nana walks 100 milesRead More

An amazing 10 in 10 for Action Duchenne

19 May 2021 by Victoria Edwards

For the last 10 days Samantha Lews has run 10km every day! Her reason for running is her friends son Lewis, who is 13 and lives with Duchenne …

An amazing 10 in 10 for Action DuchenneRead More

Victoria’s blog: Congratulations and THANK YOU to our Captain Tom 100 Heroes

7 May 2021 by Victoria Edwards

Last weekend our Captain Tom 100 Heroes took on some very special challenges to help raise money for Action Duchenne. Mary Down, whose grandson …

Victoria’s blog: Congratulations and THANK YOU to our Captain Tom 100 HeroesRead More

Shining a spotlight on Harry and Ben

4 May 2021 by Samantha

Over the coming months we'll be sharing the stories of our incredible virtual and in person London Marathon runners. We are delighted to introduce …

Shining a spotlight on Harry and BenRead More

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