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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

The power of our community

12 July 2023 by Florence Boulton

The power of our community Our team up and down the country continue to do great job delivering the Science-on-Tour workshops; building contacts …

The power of our communityRead More

Kelly’s Action Duchenne journey so far

25 June 2023 by KellyAD

Kelly Molkenthin has been with the Action Duchenne team since March. She's sharing a bit more about how she got here, what she's been up to and what …

Kelly’s Action Duchenne journey so farRead More

Join National Director Florence Boulton as part of our Vitality London 10,000 Team!

20 June 2023 by Lizzie Cox

Join National Director Florence Boulton as part of our Vitality London 10,000 Team! On September 24th 2023, the hugely popular Vitality London …

Join National Director Florence Boulton as part of our Vitality London 10,000 Team!Read More

RAF Falcon Sgt Doug McAll to lift the weight of a C130J Hercules

15 June 2023 by Victoria Edwards

On Friday 30th June 2023 I will be lifting the weight of a C130J Hercules aircraft (34,270kg) by deadlifting 100kg for 343 reps in as fast a time as …

RAF Falcon Sgt Doug McAll to lift the weight of a C130J HerculesRead More

Join our At Home Superheroes!

15 June 2023 by Lizzie Cox

Join our At Home Superheroes! Ivelina, mum of Presian ( 5 year old DMD hero ), tells us what motivated her family to sign up for the Superheroes …

Join our At Home Superheroes!Read More

Much more than altruism

7 June 2023 by Lizzie Cox

Much more than altruism 1st - 7th June marks National Volunteers Week 2023. I began volunteering for Action Duchenne in 2019. My son Sebastian …

Much more than altruismRead More

June Runner Support Session

6 June 2023 by Victoria Edwards

We had our first ever runner support session on Zoom on Monday 5th June at 7pm. Our runner support sessions are for people who have registered to …

June Runner Support SessionRead More

Jake’s 21st Birthday Bash

2 June 2023 by Victoria Edwards

We want to say a big Thank you to the Ambler family for asking for donations to Action Duchenne in celebration of Jake's 21st Birthday. They raised …

Jake’s 21st Birthday BashRead More

Fighting for the future

31 May 2023 by Lizzie Cox

Fighting for the future While we continue our much needed day to day work supporting our families, I want to share with you the recent developments …

<strong>Fighting for the future</strong>Read More

“Making something positive out of something negative”

12 May 2023 by Lizzie Cox

"Making something positive out of something negative" “We chose to support Action Duchenne because not only do they focus on research & …

“Making something positive out of something negative”Read More

The story behind Ruth’s charity dinner dance

11 May 2023 by Lizzie Cox

The story behind Ruth's charity dinner dance Ruth and Ian Taylor tell us about their journey with Duchenne so far in this inspiring interview. Ruth …

The story behind Ruth’s charity dinner danceRead More

Turning Point – a Mum’s Perspective

5 May 2023 by Lizzie Cox

Lizzie Deeble, Action Duchenne Project Assistant and Duchenne Parent, shares the some of the challenges facing her son Sebastian at this stage of his …

Turning Point – a Mum’s PerspectiveRead More

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