Written by Pilar Maestre I am Pilar, currently 22 years old, and I have lived most of my life in Spain, where I was born. Recently, I volunteered …
RAF Falcons support Action Duchenne for their 2023 display season
Charity is very important to the RAF Falcons and every year they find time during their busy schedule to raise money for select charities nominated by …
RAF Falcons support Action Duchenne for their 2023 display seasonRead More
Introducing our London Marathon Heroes
Article by Victoria Young, Engagement and Support Officer This Sunday 3rd October we have four runners taking on the London Marathon and five …
Lottery backs ‘All-through Support’ for Duchenne
ON this World Duchenne Awareness Day, we are very pleased to announce that The National Lottery Community Fund has chosen to support our much-needed …
Making a difference
It’s not all marathons and mountain climbing, the little things make a big impact too! Thanks to Jess Breeze (Action Duchenne volunteer and Mum …
Giving back in honour of Thomas
When Thomas was around 7 years old, Adam remembers him having his appendix out. Adam arranged for a card to be signed by the whole school to wish him …
Dad completes amazing endurance event challenge for Action Duchenne
Dan Brown has been running endurance events since January last year to raise money for Action Duchenne. On 5th June he completed his last endurance …
Dad completes amazing endurance event challenge for Action DuchenneRead More
Edinburgh Marathon ‘Running for a cure’
On Sunday 30th May Ian is running the Edinburgh Marathon for Action Duchenne. Ian has been inspired to run 26.2 miles after seeing the challenges …
Edinburgh Marathon ‘Our run for Ben’
I took up running, as a kind of therapy, shortly after Ben died. I was kind of cajoled on by colleagues who had run the London Marathon in …
An amazing 10 in 10 for Action Duchenne
For the last 10 days Samantha Lews has run 10km every day! Her reason for running is her friends son Lewis, who is 13 and lives with Duchenne …
Golodirsen gains conditional approval in US
Sarepta Therapeutics has announced that the FDA (the medicines regular in the US) has granted accelerated approval to golodirsen. Golodirsen, or …
Update on UNITE-DMD project
The UNITE-DMD project, which we are co-funding alongside Muscular Dystrophy UK and AFM-Téléthon brings together several strands of research to …