July 8, 2022 11:28 amPublished by Emma HallamComments Off on We are excited that we have invested £87,000 towards development of revolutionary mobility SMART suit
We recently announced that Duchenne UK has been awarded £1.25 million from the People’s Postcode Lottery Dream Fund to develop a revolutionary mobility suit....
July 4, 2022 1:10 pmPublished by Emma HallamComments Off on Italfarmaco announces positive topline data from Phase 3 trial showing positive benefits of Givinostat in Duchenne
Italfarmaco Group Announces Positive Topline Data from Phase 3 Trial Showing Beneficial Effect of Givinostat in Patients with Duchenne Muscular Dystrophy
— Study meets primary endpoint with secondary and exploratory endpoints showing consistency with primary endpoint —
— Data reinforces previously observed safety profile for Givinostat; treatment in boys with DMD continues to show a good tolerability profile —
— The company is planning to discuss the potential for marketing application submission with regulatory authorities for Givinostat in DMD —
— Results were presented at the Annual PPMD Conference on June 25, 2022 —
MILAN, Italy, June 25, 2022 – Italfarmaco Group announced today positive topline data from its completed Phase 3 EPIDYS trial with Givinostat, the company’s proprietary histone deacetylase (HDAC) inhibitor, in boys with Duchenne Muscular Dystrophy (DMD)....
June 23, 2022 9:51 amPublished by Emma HallamComments Off on Biker Stan gears up for intrepid Nordic adventure for Alex’s Wish
Intrepid motorcyclist Stan Hulme, also known as the ‘Inspired Rider’ is about to embark on a 6,000-mile Nordic solo expedition across the Scandinavian Arctic in aid of Alex’s Wish....
June 16, 2022 11:10 amPublished by Emma HallamComments Off on Emma’s Blog June 2022
Wow doesn’t it feel like such a long time ago that we were all in lockdown. Spring has been a full-on fun-packed time, with birthday celebrations, charity events, clinical trial reviews, Jubilee celebrations, driving experiences, disability skiing… and that’s just the weekends!...
June 9, 2022 11:56 amPublished by Emma HallamComments Off on Sunday Spotlight – Gill Castle
The birth of Gill Castle’s son changed her life forever. Not just in the fact she became a mother, but the trauma of childbirth left her with a permanent stoma, a surgery which someone in the UK undergoes every 39 minutes....
June 1, 2022 1:28 pmPublished by Emma HallamComments Off on Football Tournament 2022
A huge well done to the winners of our Football Tournament on Saturday – DT Systems Electrical Ltd – they took the trophy 🏆 from reigning champions Hallam Read who came second....
May 18, 2022 10:10 amPublished by Emma HallamComments Off on Spirit Pharmacy Charnwood Forest Cycle Ride 2022
Our 10th Charnwood Forest Cycle Ride 2022 took place on Sunday and we were so lucky with the weather. Rain was predicted and we only got sunshine, a perfect day to cycle....
May 5, 2022 1:23 pmPublished by Emma HallamComments Off on Synergy Personnel takes on a series of tough challenges for us, as their Charity of the Year
Recruitment business Synergy Personnel has again chosen Alex’s Wish as its Charity of The Year, unveiling an action-packed programme of fundraising events this summer and autumn....
March 20, 2022 8:21 pmPublished by Emma HallamComments Off on Sunday Spotlight: Archie’s Army
Just like our Alex, and so many young boys in the country, eight- year-old Archie has Duchenne. Here, his Mum Sam Hurst tells trustee Tom Carter how the muscular dystrophy diagnosis changed their family’s world and inspired them to start their own charity....
March 8, 2022 2:50 pmPublished by Emma HallamComments Off on Alex’s Wish encouraged by Solid Biosciences gene therapy project update
We have received an encouraging update on a gene therapy research project that we helped to fund.
In 2016 the charity invested £50,000 with life science company Solid Biosciences Inc in support of its IGNITE DMD clinical trial study for SGT-001 gene therapy....
March 8, 2022 2:26 pmPublished by Emma HallamComments Off on Prepare for Emergencies with the Duchenne UK App
When Amanda’s son Tomos-William fell forward in his shower chair, she didn’t know that, because of his DMD, he was vulnerable to certain complications. ...
February 8, 2022 4:52 pmPublished by Emma HallamComments Off on We’re Hiring
Alex’s Wish seeks part-time paid admin assistant
Would you like a rewarding part-time paid admin role? Well, how about working for a local organisation that’s really making a difference to people’s lives....
January 28, 2022 1:51 pmPublished by Emma HallamComments Off on Support from Alex’s Wish helps fund Duchenne Muscular Dystrophy (DMD) Clinical Trials Lectureship.
We are delighted to report the outcomes of our grant for a Duchenne Muscular Dystrophy (DMD) Clinical Trials Lectureship. The grant, which was supported by a consortium of seven UK charities, saw Alex’s Wish joined by Duchenne UK, Action Duchenne, Duchenne Research Fund, Duchenne Now, Duchenne UK, Harrison’s Fund and Joining Jack to invest a total of £250,000....
January 27, 2022 5:21 pmPublished by Emma HallamComments Off on Thank You to our Wonderful Ambassador Rich Copson
A huge thank you to Rich Copson, for being one of our wonderful Ambassadors for Alex’s Wish
Our charity is held together by all the wonderful supporters we have, Rich Copson, being one of our longest serving Ambassadors and good friend....
November 24, 2021 1:52 pmPublished by Emma HallamComments Off on Time to Expore Ball 2021
It was amazing to see so many supporters at our Charity Ball on Saturday, amazing memories made and what made it so very special is that our very own Alex was there as well....
October 11, 2021 8:45 amPublished by Emma HallamComments Off on Alex’s Wish Supporters Lunch 2021
On Friday 8th October we held our Supporters’ Thank you Lunch at the Novotel in Leicester. It was a great event and so good to be able to invite all our supporters, in person, to thank them for all that they had done for us over the last 18 months....