• 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
  •  0 items - £0.00
  • Menu
  • Skip to right header navigation
  • Skip to main content
  • Skip to secondary navigation
  • Skip to footer

Before Header

  • My account
  •  0 items - £0.00

Action Duchenne

Header Right

  • 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

On the road with the Science on Tour

June 16, 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..

June 16, 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

June 14, 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

May 27, 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 

May 10, 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

May 10, 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

May 9, 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

May 5, 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

April 27, 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

April 20, 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

That word…Hospice

April 20, 2022 by Lizzie Cox

Article by Ashley Lawmon, Duchenne Mum If you're anything like me this word fills you with dread and fear. I put that conversation off for years! …

That word…HospiceRead More

Limitations…

April 20, 2022 by Lizzie Cox

Article by Duchenne Mum Ashley Lawmon Who here has been told that your child won't do this and won't do that? Because I know I did. He won't jump, …

Limitations…Read More

  • « Go to Previous Page
  • Page 1
  • Interim pages omitted …
  • Page 6
  • Page 7
  • Page 8
  • Page 9
  • Page 10
  • Interim pages omitted …
  • Page 17
  • Go to Next Page »

Footer

Action Duchenne
5th Floor, Mariner House
62 Prince Street
Bristol
BS1 4QD

07535 498 506
info@actionduchenne.org 

 

 

 

 

 

 

 

 

Subscribe to our mailing list

Do you consent to receiving regular email updates? *
Email Format
  • Accessibility
  • Privacy Policy
  • Terms & Conditions

© Action Duchenne - Registered Charity No 1101971 - Scottish Charity No SC043852

Like most websites we use cookies to deliver a personalised service. To use the website as intended please accept cookies.
Privacy & Cookies Policy

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary
Always Enabled
Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.
Non-necessary
Any cookies that may not be particularly necessary for the website to function and is used specifically to collect user personal data via analytics, ads, other embedded contents are termed as non-necessary cookies. It is mandatory to procure user consent prior to running these cookies on your website.
SAVE & ACCEPT