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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
    • In-Person Support Events
    • Schools
    • End of Life and Bereavement
  • Community Summit
    • Action Duchenne Community Summit 2026 (Previously 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

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

AD Champions take on London Landmarks Half Marathon

4 April 2023 by Victoria Edwards

On Sunday 2nd April our seven AD Champions took to the streets of London to run the half marathon London Landmarks route. The weather was good - no …

AD Champions take on London Landmarks Half MarathonRead More

Lighter Days and Warmer Months

3 April 2023 by Florence Boulton

Lighter Days and Warmer Months As we head into Spring, it is wonderful to begin to see the longer lighter days, the flowers beginning to bloom and …

Lighter Days and Warmer MonthsRead More

Continuing to come together

10 March 2023 by Florence Boulton

Continuing to come together 2023 has already brought meaningful victories as we rally science to our support. In January we heard that NICE has …

Continuing to come togetherRead More

An overview of Translarna

22 February 2023 by Lizzie Cox

Translarna (ataluren) is the first licensed treatment for an underlying genetic cause of Duchenne muscular dystrophy. It has been designed to target a …

An overview of TranslarnaRead More

Starting 2023 with hope

2 February 2023 by Lizzie Cox

Starting 2023 with hope I want to begin by wishing all of you a very happy new year and sharing the hope that 2023 will be a year of positive …

Starting 2023 with hopeRead More

2023 is the year of the half marathon and family friendly, fully inclusive events!

19 January 2023 by Victoria Edwards

It’s been a busy few months building our 2023 Events Fundraising challenges. It’s set to be an amazing year, with so many amazing individuals signing …

2023 is the year of the half marathon and family friendly, fully inclusive events!Read More

Reflection and celebration

20 December 2022 by Lizzie Cox

A blog by Florence, National Director As we move toward the end of 2022, I’ve been looking back on the year we've had and reflecting on both the …

Reflection and celebrationRead More

More than Hanging Out

9 December 2022 by Lizzie Cox

More than Hanging Out Blog by Jess Breeze, Programme Assistant When I spent an amazing day with the Sporting Bears on 19th March, (see blog here …

More than Hanging OutRead More

Our amazing week in Levi, Lapland

7 December 2022 by Victoria Edwards

by Julia Marren, Duchenne parent to Lucas and Charlie We’ve never taken the boys abroad before; I was excited but worried. How would the boys cope …

Our amazing week in Levi, LaplandRead More

International Conference and Community

2 December 2022 by Florence Boulton

International Conference and Community Blog by Florence, National Director Hello everyone! I am glad to be back sharing with you my updates …

International Conference and CommunityRead More

Festive Hamper Competition

30 November 2022 by Victoria Edwards

*This competition has now closed and we are making contact with our winner!* As a thank you for supporting us this year we are are giving you the …

Festive Hamper CompetitionRead More

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