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
Wave announces trial results and new trial plans
Wave Life Sciences have today announced the results of their early stage phase 1 clinical trial of Suvodirsen, as well as their plans for a much …
Department for Transport Meeting
Yesterday our CEO, Shelley, was invited to the House of Commons to meet with the Secretary-under-State for the Department of Transport, Nusrat Ghani …
Match funding brings Trustee’s fundraising to over £4,000
A fortnight ago, one of our wonderful Trustees, Sarah Colvin, braved the elements and completed her cycle from London to Penzance. Facing windy hill …
Match funding brings Trustee’s fundraising to over £4,000Read More
Santhera announces plans to apply for conditional approval for Puldysa
Santhera Pharmaceuticals has announced plans to submit an application for Conditional Approval for Puldysa (also known as idebenone and Raxone) for …
Santhera announces plans to apply for conditional approval for PuldysaRead More
