A big congratulations to Alexis Ellison who cycled an astonishing 282 miles in 24.5 hours this weekend, completely unsupported. 2 years ago Lex, …
EAMS renewed for Idebenone
Santhera Pharmaceuticals has announced that the UK’s medicines regulator (the MHRA) has renewed the Early Access to Medicines Scheme (EAMS) for …
CPG meeting in Scottish Parliament
Last week Shelley attended a Cross Party Group meeting at the Scottish Parliament with our Scottish Advocacy Officer, John Miller. They were joined at …
Stoke by Nayland charity golf day
On Saturday the 8th of June the Stoke by Nayland Golf Club men's captain, John Sandford, held his charity day in support of Action Duchenne. 34 …
Awesome Abseil 2019 was incredible
On Saturday 8 June 2019, 14 brave, amazing people descended the breathtakingly high Northampton Lift Tower. They were cheered on by their families, …
Awesome Abseil tomorrow!
Tomorrow, 13 amazing people will be abseiling 418 feet down the National Lift Tower in Northampton for Action Duchenne. Each have their own …
Shelley meets with Jonny Gould
Yesterday Shelley met with Action Duchenne Ambassador and radio broadcaster, Jonny Gould. Since becoming an Ambassador in March 2019, Jonny has become …
Santhera completes Puldysa EMA submission
Santhera has submitted a marketing application to the EMA - the drug regulator in Europe - for Puldysa. Puldysa, which used to be called Raxone, is a …
Sign up deadline for Ride London 100 – TOMORROW!
The Prudential Ride London-Surrey 100 is a perfect traffic-free ride for a range of cycling abilities! Born out of the cycling legacy of the 2012 …
Parents present to healthcare officials
Last Friday, Lynnette Ellison our Community Fundraising & Marketing Officer presented Duchenne from a Parent's Perspective to healthcare officials …
Gene therapy trial update from Solid
Solid Biosciences has announced that the next stage of their clinical trial of a gene therapy has started, following the dose increase announced in …
Catabasis opens new UK sites in Edasalonexent trial
Catabasis has announced that their trial of edasalonexent is now open at 2 centres in the UK. Sites in Bristol and Manchester are recruiting and two …
Catabasis opens new UK sites in Edasalonexent trialRead More
