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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
    • 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

A postcard from Florence

7 July 2022 by Lynnette

This past fortnight, Florence, our National Director has joined Mehreen and Alex at the Science on Tour workshops in Birmingham and Newcastle. …

A postcard from FlorenceRead More

Seizing control empowering adults by transforming transition

23 June 2022 by Lynnette

Blog by Florence Boulton, National Director Last week I had the opportunity to join our first session in the ‘Yes I can’ transition to adulthood …

Seizing control empowering adults by transforming transitionRead More

On the road with the Science on Tour

16 June 2022 by Mehreen Arif

Wow! What an amazing 3 weeks it has been at the Duchenne Science on Tour 2022. We are officially 'on the road', travelling the country to visit the …

On the road with the Science on TourRead More

My Dad is..

16 June 2022 by Victoria Edwards

This Father’s Day we want to acknowledge all of the amazing dads in our Duchenne community. We are celebrating the Duchenne dads in every and any …

My Dad is..Read More

Newfound freedom on the South Downs

14 June 2022 by Lizzie Cox

Article written by Albert Wright - Duchenne Dad & Action Duchenne volunteer "We recently acquired the Trekinetic GTE wheelchair.  We got this …

Newfound freedom on the South DownsRead More

Scrutinising the science of Duchenne

27 May 2022 by Lynnette

Blog by Florence Boulton, National Director Wow, what a day! After months of hard work, we finally pulled out all the stops today, kicking off the …

Scrutinising the science of DuchenneRead More

Determination and achievement 

10 May 2022 by Lynnette

This article is written by Florence Boulton, National Director “We are all stronger, together” is a fantastic motto, but it’s even better when put …

Determination and achievement Read More

Peer to peer support – Chloe and Lyndsey

10 May 2022 by Samantha

This article is written by Duchenne parents Chloe and Lyndsey who were carefully matched by our Support team. Chloe In Jan 2021 we officially …

Peer to peer support – Chloe and LyndseyRead More

Peer-to-peer support – I don’t feel so alone anymore

9 May 2022 by Samantha

This article is written by a Duchenne Mum, Vicki, about her experience with Action Duchenne’s peer-to-peer support. Hi my name is Vicki, I have an …

Peer-to-peer support – I don’t feel so alone anymoreRead More

Peer-to-peer support – meeting a fellow mom

5 May 2022 by Lynnette

This article is written by a Duchenne Mum, Ruth, about her experience with Action Duchenne's peer-to-peer support. When my son was diagnosed with …

Peer-to-peer support – meeting a fellow momRead More

DNACPR, choice and living life to the fullest

27 April 2022 by Samantha

In 2021 Joshua graduated from UCLan with a first-class BA Hons in Film and Media Studies.  He has created documentaries, films and is an avid …

DNACPR, choice and living life to the fullestRead More

Peer-to-peer support – feeling positive for the future

20 April 2022 by Lynnette

Article by Sarah | Duchenne Mum After my son was diagnosed last June I started following Action Duchenne on social media. I decided to join a Zoom …

Peer-to-peer support – feeling positive for the futureRead More

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