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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
  • 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

LEGO Quest

8 November 2020 by Lynnette

Calling all LEGO master builders We are super excited to launch the Action Duchenne LEGO Quest. To be in with a chance of winning one of our 8 …

LEGO QuestRead More

Pages: Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7

Recognising the power of our community

12 October 2020 by Lynnette

A message from the National Director, Florence Boulton The past four weeks, since I last wrote to you all, has been a rollercoaster of extreme …

Recognising the power of our communityRead More

Webinar has life-changing impact on Duchenne family

5 October 2020 by Lynnette

"Just a few days into lockdown, an email landed in my inbox from Action Duchenne offering us a free webinar with a physiotherapist. I bookmarked it, …

Webinar has life-changing impact on Duchenne familyRead More

We did it! Tour de Taylor Wimpey

16 September 2020 by Samantha

There were times when we thought it might not happen, back in June when we had to postpone it and during the ride when we woke up on Saturday morning, …

We did it! Tour de Taylor WimpeyRead More

Matt’s AVR Cycle September

9 September 2020 by Samantha

We are proud to share Matt's story as he raises money for Action Duchenne throughout September with our very own Angela Stringer's son Jonathan in his …

Matt’s AVR Cycle SeptemberRead More

Taking action and making an impact

4 September 2020 by Lynnette

A message from the National Director, Florence Boulton This week and next, many of our families are feeling a mix of emotions, as they send their …

Taking action and making an impactRead More

Shining a spotlight on two very special ladies

10 August 2020 by Samantha

Maggie and Maria are two wonderful volunteers who have shaken their buckets at collections, cheered at various events, as well helping at our …

Shining a spotlight on two very special ladiesRead More

Summer ‘holiday’ after lock-down

28 July 2020 by Lynnette

A message from the National Director, Florence Boulton At the start of what would normally be the season for summer ‘holidays’, my thoughts go to …

Summer ‘holiday’ after lock-downRead More

Accessing History in Lockdown

23 July 2020 by Samantha

By Dan Miller Whilst lockdown may be easing with some venues reopening, restrictions are still in place and so it remains a challenge to visit many …

Accessing History in LockdownRead More

Thank you to the staff and pupils at Immanuel College

8 July 2020 by Samantha

A very special thank you to Eddie Curtis, 14, who bravely gave a presentation to 700 pupils at his school about Duchenne muscular dystrophy, and the …

Thank you to the staff and pupils at Immanuel CollegeRead More

A huge shout out to Eimear O’Doherty

7 July 2020 by Samantha

Eimear is just 15 years old, she lives at home with her parents Deborah and Kevin, and siblings Oran 18, Ciara 17 and Niall who lives with Duchenne …

A huge shout out to Eimear O’DohertyRead More

Shining a spotlight on Sam Heathcote – a very special young fundraiser

7 July 2020 by Samantha

Sam's kind hearted, generous and thoughtful nature shines through everything he does to support us and our work. Inspired by his good friend Toby …

Shining a spotlight on Sam Heathcote – a very special young fundraiserRead More

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