Join our At Home Superheroes! Ivelina, mum of Presian ( 5 year old DMD hero ), tells us what motivated her family to sign up for the Superheroes …
Much more than altruism
Much more than altruism1st - 7th June marks National Volunteers Week 2023. I began volunteering for Action Duchenne in 2019. My son Sebastian had been …
June Runner Support Session
We had our first ever runner support session on Zoom on Monday 5th June at 7pm.Our runner support sessions are for people who have registered to take …
Jake’s 21st Birthday Bash
We want to say a big Thank you to the Ambler family for asking for donations to Action Duchenne in celebration of Jake's 21st Birthday. They raised …
Fighting for the future
Fighting for the futureWhile we continue our much needed day to day work supporting our families, I want to share with you the recent developments …
“Making something positive out of something negative”
"Making something positive out of something negative"“We chose to support Action Duchenne because not only do they focus on research & educating, …
“Making something positive out of something negative”Read More
The story behind Ruth’s charity dinner dance
The story behind Ruth's charity dinner danceRuth and Ian Taylor tell us about their journey with Duchenne so far in this inspiring interview. Ruth …
Turning Point – a Mum’s Perspective
Lizzie Deeble, Action Duchenne Project Assistant and Duchenne Parent, shares the some of the challenges facing her son Sebastian at this stage of his …
AD Champions take on London Landmarks Half Marathon
On Sunday 2nd April our seven AD Champions took to the streets of London to run the half marathon London Landmarks route. The weather was good - no …
AD Champions take on London Landmarks Half MarathonRead More
Lighter Days and Warmer Months
Lighter Days and Warmer MonthsAs we head into Spring, it is wonderful to begin to see the longer lighter days, the flowers beginning to bloom and the …
Continuing to come together
Continuing to come together2023 has already brought meaningful victories as we rally science to our support. In January we heard that NICE has …
An overview of Translarna
Translarna (ataluren) is the first licensed treatment for an underlying genetic cause of Duchenne muscular dystrophy. It has been designed to target a …
