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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
    • In-Person Support Events
    • Register for Support
      • Time Out – A Space for Mums
      • Dads Against Duchenne
      • Grandparents Together
      • Open Space
      • Group Counselling Programme
    • Recently diagnosed
    • 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 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

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

Long-standing Trustee launches charity album

January 14, 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

January 7, 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!

January 7, 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

December 16, 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

December 10, 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

November 30, 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

November 19, 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!

November 15, 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

It’s the final countdown!

November 10, 2021 by Lynnette

Hello again everyone! I’m glad to be back sharing with you my updates and insights from the Conference planning coal-face!  The newly …

It’s the final countdown!Read More

We are together, with you

November 2, 2021 by Lynnette

“Holding it together when I was speaking at the Newly Diagnosed family event” was one of my colleague’s proudest accomplishments this week. We were …

We are together, with youRead More

Sam’s 2nd Conference blog

October 14, 2021 by Samantha

Hi everyone! It’s been wonderful to see all your registrations coming through this week for the pre-conference event for Newly Diagnosed families and …

Sam’s 2nd Conference blogRead More

LEGO Quest 2021

October 12, 2021 by Lynnette

Calling all LEGO master builders We are super excited to launch the second annual Action Duchenne LEGO Quest. What you need to …

LEGO Quest 2021Read More

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