Next Pyjamas
We couldn’t believe it when Next approached us to suggest collaborating on a product to celebrate Duchenne Awareness Day! After lots of fun discussions it was decided that Next would develop boys pyjamas with racing cars on, representing Alex’s love of motor racing. They went on sale in September to fall in line with Duchenne […]
Salusbury, Harding & Barlow
This week we met up with Salusbury, Harding & Barlow, we love catching up with these guys! SHB have supported us since 2016 – when they chose us as their charity of the year! Since then they have been a constant support and have worked with us in so many ways. They are the kindest, […]
Givinostat – Early Access Scheme – the fight continues for patients to gain access
Alex has been taking part in clinical trials most of his life – 9 years in fact. We are so grateful this has been the case, when Alex was diagnosed with Duchenne at 3 years old – there were no trials available for us to even consider. The purpose of taking part in clinical trials […]
Early Access Programme for Givinostat
We’ve been talking about Givinostat for some time now especially at our events.This is a new drug that Alex has been on for the past 5 years, that is proving to be delaying disease progression.It’s currently going through the NICE approval process, but as with these things it’s a slow process – all while families […]
An incredible result for our ‘back to the 80’s rewind’ ball…
Wow – what an incredible evening, honestly we loved it so much!! We arrived early Saturday morning at our hosts Winstanley House to set up, decorate and get everything in place to welcome our amazing guests, and as the day went on the excitement grew – the decorations, AV, the balloon arch…….and then the dancefloor […]
Autumn Lunch 2024
What an incredible afternoon we had at our Annual Autumn Lunch at The Novotel in Leicester to celebrate our fabulous supporters, volunteers, trustees, and ambassadors and together what we have achieved over the last 12 months. We could not do what we do without you, thank you for being our part of our community A […]
Taking to the skies for Alex’s Wish
Last Sunday saw 9 amazing Alex’s Wish supporters taking part in an epic Wing Walk, each of them overcoming their fears to take on this incredible challenge! We are so proud of each one of them. Everyone gathered at Wickenby Airport in Lincolnshire under clear skies ready to get strapped to the wing of a […]
THE TEAM TAKE TO THE SKY IN DAREDEVIL WING WALK
Our lovely founder Emma Hallam is taking on a daredevil wing walk designed to raise awareness and funds to battle this disease. The daredevil team, will be facing their fears to undertake a wing walk challenge at Wickenby Aerodrome, Lincolnshire on 18th August. Led by charity founder, Emma Hallam (pictured), and trustee turned wing-woman, Glynis […]
Fashion Show 2024
Thank you to everyone who joined us at The Bodie Hodges Foundation and Alex’s Wish Fashion show – it was a fabulous event. DC Boutique showcased their beautiful collections in the most perfect venue, BRIDGE HOUSE BARN LTD who were fantastic hosts. We would have not been able to put this event on without our […]
Football Tournament 2024
What a fabulous day we had at our Charity Football Tournament on Saturday, 15th June taking place at Quorn Football Club! I think that we experienced a wide variety of weather – thunder, lightening, hailstones and sunshine! But it did not spoil the day, which raised a fabulous £3,669!! We would like to say a […]