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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
    • Register for Support
      • Time Out – A Space for Mums
      • Dads Against Duchenne
      • Grandparents Together
      • Online Group Counselling Programme
    • Recently diagnosed
    • Children and Young People
    • Summer 2026 In-Person Family Days
    • Schools
    • End of Life and Bereavement
  • Community Summit
    • Action Duchenne Community Summit 2026 (Previously 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

Becoming a foster carer

31 January 2022 by Lynnette

Article written by Jon Powton, Foster Carer Feeling relevant in a world where being different can feel like a crime is never an easy thing. Wearing …

Becoming a foster carerRead More

Behind the scenes at Action Duchenne’s Santa’s Grotto

24 January 2022 by Lynnette

This time last year, I was proudly clicking ‘share’ on the impact report for our 2020 Christmas Campaign. We’d sprinkled a touch of magic at a time …

Behind the scenes at Action Duchenne’s Santa’s GrottoRead More

Fundraising total announced for GP’s epic 362 mile run

20 January 2022 by Lynnette

This week, Duchenne family and long-standing Action Duchenne supporters, the O'Doherty's of Derry, Ireland announced they have raised an incredible …

Fundraising total announced for GP’s epic 362 mile runRead More

Farewell 2021, welcome 2022

14 January 2022 by Lynnette

A message from our National Director, Florence Boulton Another year has flown by! A very Happy New Year to all my colleagues, partners, families …

Farewell 2021, welcome 2022Read More

Long-standing Trustee launches charity album

14 January 2022 by Lynnette

ACTION Duchenne’s longest-serving Trustee, Mark Silverman, has today launched his lock-down inspired album ‘Markin’ Time’.  Taking vocals for …

Long-standing Trustee launches charity albumRead More

Indoor Skydive

7 January 2022 by Victoria Edwards

This Christmas I wanted to make sure my son Dougie and his younger sister, Allie, were given the gift of an amazing experience. On Christmas Day they …

Indoor SkydiveRead More

It’s Dip Time!

7 January 2022 by Victoria Edwards

We want to say a big splashy thank you to Karen and her family for braving the sea on Boxing Day. Their continued support means so much to …

It’s Dip Time!Read More

Happy Holidays from our National Director

16 December 2021 by Lynnette

It’s beginning to look a lot like Christmas!  This week, we’ve launched our Action Duchenne Santa’s Grotto; a little thank you to our …

Happy Holidays from our National DirectorRead More

Sound Force & The Velvet Tones: Concerts for Action Duchenne

10 December 2021 by Victoria Edwards

We want to say a big thank you to Sound Force Big Band and The Velvet Tones for the amazing concerts they put on for Action Duchenne in December and …

Sound Force & The Velvet Tones: Concerts for Action DuchenneRead More

A day with the Sporting Bears

30 November 2021 by Lynnette

Article by Jess Breeze | Duchenne Mum | Volunteer I have worked with my colleague Kim for nearly 5 years, I’ve known she was ‘into her cars’ and I …

A day with the Sporting BearsRead More

International Conference and community

19 November 2021 by Lizzie Cox

Blog by Florence Boulton, National Director - written in Cambridge just after we finished delivering the Action Duchenne International Conference …

International Conference and communityRead More

Lego Quest 2021 winners!

15 November 2021 by Samantha

Wow, what a weekend we have had, thank you so much for joining us! We are excited to announce the winners of the Lego Quest 2021, supported by The …

Lego Quest 2021 winners!Read More

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