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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

Vamorolone and Corticosteroids – An Overview

1 February 2024 by John Marrin

What are corticosteroids? Corticosteroids are a class of steroid hormones that includes glucocorticoids and mineralocorticoids. However, the term …

Vamorolone and Corticosteroids – An OverviewRead More

Finding Purpose and Hope – A Sibling’s Story

24 January 2024 by Lizzie Cox

Written by Pilar Maestre I am Pilar, currently 22 years old, and I have lived most of my life in Spain, where I was born. Recently, I volunteered …

Finding Purpose and Hope – A Sibling’s StoryRead More

Resilience, care and transformation – end of year reflections from our CEO 

20 December 2023 by Florence Boulton

Resilience, care and transformation - end of year reflections from our CEO  As we head towards the bustle and business of the festive season, I am …

Resilience, care and transformation – end of year reflections from our CEO Read More

Advocacy and Campaigns: using our experience, voice and resources to make change happen

25 November 2023 by Lizzie Cox

Advocacy and Campaigns: using our experience, voice and resources to make change happen Written by Kathy Wedell We are pleased to introduce …

Advocacy and Campaigns: using our experience, voice and resources to make change happenRead More

Creating a Shared Vision for Our Duchenne Community – Reflections and Thanks

17 November 2023 by Florence Boulton

Creating a Shared Vision for Our Duchenne Community - Reflections and Thanks Wow, what an amazing two days we have had together at our Annual …

Creating a Shared Vision for Our Duchenne Community – Reflections and ThanksRead More

The strength of our community

6 October 2023 by Florence Boulton

The strength of our community As we move towards the last few months of the year, I am so proud of the hard work that is coming to fruition. When …

<strong>The strength of our community</strong>Read More

My experience as a mentor on the Yes, I Can Residential Weekend

5 October 2023 by Lizzie Cox

My experience as a mentor on the Yes, I Can Residential Weekend A blog by Benjamin James Recently, I was asked by Action Duchenne to be a mentor …

My experience as a mentor on the Yes, I Can Residential WeekendRead More

Duchenne from the sidelines, a sibling perspective

15 September 2023 by Lizzie Cox

Duchenne from the sidelines, a sibling perspective Written by Logan Kaye, Duchenne sibling Whenever you hear about a family who has been …

Duchenne from the sidelines, a sibling perspectiveRead More

Supporting families with science

5 September 2023 by Lizzie Cox

Supporting families with science It's already been 8 months since I joined Action Duchenne as a Science Communications Coordinator – a journey …

Supporting families with scienceRead More

A Postcard from Florence

30 August 2023 by Lizzie Cox

A Postcard from Florence Florence joined a group of young people and their parents and carers at the Calvert Trust in Exmoor over the August bank …

A Postcard from FlorenceRead More

July Runner Support Session

17 July 2023 by Victoria Edwards

We had our second runner support session on Zoom on Thursday 13th July at 7pm. Unfortunately no one was able to attend so we did not record the …

July Runner Support SessionRead More

Summer Fundraising

14 July 2023 by Lizzie Cox

Summer Fundraising The Summer is a brilliant time to fundraise - the sunshine, longer days and school holidays mean there’s much more scope to get …

<strong>Summer Fundraising</strong>Read More

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