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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

Helping you through COVID-19

6 April 2020 by Lynnette

Support and resources for our Duchenne community A message from the National Director, Florence Boulton With the impact of COVID-19 on our …

Helping you through COVID-19Read More

#DAY18OFISOLATION

23 March 2020 by Lynnette

A blog by Duchenne Mum - Ashley 18 days ago I made the decision for my family to take everyone out of school/nursery, some may think I was a little …

#DAY18OFISOLATIONRead More

Isolation for the nation

23 March 2020 by Lynnette

A blog by Duchenne Dad, Darren Well, CV19 is here, so what do we do about it, how will we fill our time, how do we alleviate the boredom of self …

Isolation for the nationRead More

Supporting families – Lynnette’s perspective

20 March 2020 by Lynnette

In April 2016, 6 months after my son was diagnosed with Duchenne muscular dystrophy, I joined the Action Duchenne team. I felt I had to do something …

Supporting families – Lynnette’s perspectiveRead More

Hundreds inspired by Duchenne Science on Tour project

12 March 2020 by Samantha

We recognised that keeping up with research news can be challenging, with news stories and press releases using language that's much more …

Hundreds inspired by Duchenne Science on Tour projectRead More

My first month at Action Duchenne

9 March 2020 by Lynnette

When the National Director role at Action Duchenne came up last November and I started reading about all the work the charity does, it was inspiring …

My first month at Action DuchenneRead More

Raising the profile of Duchenne with Primary School pupils on Rare Disease Day

8 March 2020 by Lynnette

Lizzie, Duchenne Mummy and one of Action Duchenne's volunteer Community Champions, was asked to go into her son’s school to give a talk about Duchenne …

Raising the profile of Duchenne with Primary School pupils on Rare Disease DayRead More

Advocacy at a Norfolk Primary school

14 November 2019 by Lynnette

Our Patient Advocate and Registry Curator, Angela Stringer attended a meeting this week in a Norfolk primary school to support a Duchenne …

Advocacy at a Norfolk Primary schoolRead More

Update on our campaigning work

8 November 2019 by Lynnette

As part of our vision of a world where lives are no longer limited by Duchenne muscular dystrophy, one of our key objectives is campaigning for …

Update on our campaigning workRead More

Advocacy at a North West Primary School

7 November 2019 by Lynnette

Hot on the heels of her presentation to the group of Trainee Physiotherapists last week, Lynnette donned her Advocacy hat again and travelled to the …

Advocacy at a North West Primary SchoolRead More

Presenting Duchenne to our future physios

31 October 2019 by Lynnette

Our vision is very clear, a world where lives are no longer limited by Duchenne muscular dystrophy. In our ongoing work to achieve this vision, along …

Presenting Duchenne to our future physiosRead More

Progression of time – Benjamin James

6 March 2019 by abzali123

Taken from Benjamin James' blog HorizonsofHope - living with a neuromuscular condition, feelings, frustrations and hope.  "Recently I have …

Progression of time – Benjamin JamesRead More

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