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 …
Duchenne Science events back on the road in 2020
We've welcomed over 100 people to our Science on Tour events throughout 2019, these empowering and invaluable sessions have been a huge success and we …
An unforgettable weekend at #ADCON19
Thank you to each and every person who attended the Action Duchenne International Conference 2019. We have all had such a wonderful weekend with …
Thank you for helping us build a community
Wow, we've had a busy few weeks here at AD HQ, delivering one of our 3 key objectives of 'building a community'. Our team have barely touched the …
Patron wows audiences with moving X Factor performance
We were captivated by our Patron, Martin Bashir's beautiful show stopping performance of Nat King Cole's L-O-V-E on this weekend's The Celebrity …
Patron wows audiences with moving X Factor performanceRead More
Patron Martin Bashir to feature in Celebrity X Factor
We are excited to share with you that our Patron, Martin Bashir, is featuring in the forthcoming Celebrity X Factor series in the 'OVERS' …
Patron Martin Bashir to feature in Celebrity X FactorRead More
Cross Party Group meeting on Rare, Genetic and Undiagnosed Conditions
Last week Action Duchenne attended a meeting of the Cross Party Group on Rare, Genetic and Undiagnosed Conditions at the Scottish Parliament. The …
Cross Party Group meeting on Rare, Genetic and Undiagnosed ConditionsRead More
Accident and Emergency Admissions
Simon and Shelley had a very productive meeting with the NHS Digital team last week who lead on data gathering and analysis. This forms a key part of …
Where’s my chair?
Action Duchenne’s Where’s my chair? campaign set out to achieve full wheelchair access for people living with Duchenne. We had a fantastic …
World Duchenne Awareness Day
Our Patron, Harry Hill and Ambassador, Jonny Gould share their messages on World Duchenne Awareness Day. …
