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  • About Us
    • Our Purpose
    • Our Strategy
    • 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
      • Open Space
      • Group Counselling Programme
    • Recently diagnosed
    • Connect with Others
    • Support for 8-14 yrs ‘Turning Point’
    • Support for 14-25 yrs ‘Yes I Can’
    • Schools
    • Siblings
    • End of Life and Bereavement
  • AD Annual International Conference
    • Highlights from the Action Duchenne Conference 2025
    • Action Duchenne Annual International Conference 2025
  • News, Webinars and Blogs
    • News
    • Webinar Series 2025
      • Webinar Series 2025
      • 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
  • 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

Welcoming Autumn 2024

September 29, 2024 by Lizzie Cox

As we transition from the warmth of summer to the crisp embrace of autumn, it’s a moment to reflect on our progress and the importance of community …

Welcoming Autumn 2024Read More

Help Improve Understanding of Nutrition and Weight Management in DMD

August 28, 2024 by John Marrin

Do you have 15 minutes and want to help improve our scientific understanding of the influence of nutrition and weight management in Duchenne muscular …

Help Improve Understanding of Nutrition and Weight Management in DMDRead More

Welcoming Summer

July 12, 2024 by Florence Boulton

Welcoming Summer It feels as though we have waited a while for warmer days this year and it is hard to believe that we are already over half way …

Welcoming SummerRead More

Fundraising Story – The Glasgow Kiltwalk for Action Duchenne

June 27, 2024 by Lizzie Cox

The Glasgow Kiltwalk for Action Duchenne Written by Sarah Kelly Last month my partner Paul and I took part in the Glasgow Kiltwalk to raise …

Fundraising Story – The Glasgow Kiltwalk for Action DuchenneRead More

Science on Tour 2024 – Oxford

June 21, 2024 by John Marrin

On Tuesday the 11th of June, the team at Action Duchenne launched the first in our series of Science on Tour for 2024, kicking off our tour at the …

Science on Tour 2024 – OxfordRead More

Carrying Duchenne – A sisters view

June 6, 2024 by Victoria Edwards

By Sarah Kelly Medical conditions can be isolating for a family, particularly rare ones. Our lives changed when my little brother Jonathan was …

Carrying Duchenne – A sisters viewRead More

Sunshine and Support

May 10, 2024 by Florence Boulton

As the sunshine begins to make a welcome appearance, I hope you have all had a wonderful May bank holiday and are looking forward to time together …

Sunshine and SupportRead More

Givinostat & Epigenetics – An Overview

May 10, 2024 by John Marrin

This week we saw the NICE scoping consultation take place for a potential new treatment for Duchenne muscular dystrophy, Givinostat. We want to …

Givinostat & Epigenetics – An OverviewRead More

Navigating the ups and downs together

March 29, 2024 by Lizzie Cox

Navigating the ups and downs together I am writing to you just following the news that NICE have published their decision not to recommend …

Navigating the ups and downs togetherRead More

Taking Control

March 11, 2024 by Lizzie Cox

Taking Control Action Duchenne's Transition Projects for young people living with Duchenne. Yes I Can “Our Yes I Can transition project has …

Taking ControlRead More

Hope and Determination on Rare Disease Day 2024

February 29, 2024 by Florence Boulton

Hope and Determination on Rare Disease Day 2024 Today, 29th February 2024, marks Rare Disease Day. At Action Duchenne, we join with the global rare …

Hope and Determination on Rare Disease Day 2024Read More

Vamorolone and Corticosteroids – An Overview

February 1, 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

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