By Mia Fisher-Howe on September 1, 2022
Alex’s Wish, our sponsored charity, will be marking their 10th year anniversary milestone this month! They have spent the past decade dedicated to raising vital funds to bring effective new treatments and ultimately a cure to every single child and young adult living with Duchenne Muscular Dystrophy. Duchenne is a progressive, life-limiting muscle wasting condition that affects 1 in every 3,500 boys born. It affects every single muscle including the heart and lungs and leads to respiratory and heart complications.
From raising over £1.5m, to funding 32 projects, Alex’s Wish have contributed toward early-stage medical research, clinical trials and funded technological advances. In celebration of their 10-year anniversary, here’s 3 key things that they’ve been up to recently:
DMD Hub Manager post is funded for a further 4 years
Duchenne UK, alongside Alex’s Wish, is committed to the ongoing success of the DMD Hub and has recently announced a further four years of funding for the DMD Hub Manager role, bringing total investment in the DMD Hub to £4.3m. The Manager role is crucial in making sure that the different hubs up and down the country have access to the right information and have everything they need to help the DMD Hub make clinical trials available to children in the UK. The Hub have already recruited more than 300 boys for trials who otherwise may not have been!
£87,000 is put towards development of revolutionary mobility SMART suit
Alex’s Wish have invested £87,000 in the first of-its-kind exoskeleton ‘SMART’ suit project. This revolutionary, light-weight suit will help disabled teens and young adults to use their arms and upper body. It is designed to counteract muscle fatigue, increase muscle power and act as a second skin to give people living with Duchenne and other progressive diseases their strength, independence, and dignity.
£20,000 is pledged to Duchenne UK’s gene therapy grant call
So far, Alex’s Wish has pledged £20,000 towards a one million grant call into treatments which will allow everyone with Duchenne to receive gene therapy safely and effectively.Emma, Alex’s mum and CEO of Alex’s Wish comments:
“There are a few challenges with gene therapy, in that it’s delivered by a virus. So, once you’ve had a dose or been exposed to it before, your body would reject it a second time, so we just don’t know how long the initial dose would last for. We’re excited to be working with other charities such as Duchenne UK to look at alternative ways to deliver gene therapy that isn’t reliant upon a virus, which would make this treatment more reliable and effective.”
They are continuing to fundraise over the Autumn and are making great progress towards having another £80K to support this project!
Whilst this has all been going on in the background, Alex, who inspired Alex’s Wish and has Duchenne, has been taking part in a clinical trial study called Givinostat run by Italfarmaco up in Newcastle for the past 4 years. The data has recently come out and it’s showing that the trial is working and slowing down disease progression. This is amazing news for the Duchenne community. However, only 179 boys are on this trial worldwide and there are 300K boys living with Duchenne, so it’s Alex’s Wish’s aim to support in getting this drug available to every child with Duchenne.
Along with taking part in a clinical trial, Alex has just begun a new chapter in his life – A-levels! Duchenne can affect the brain, with those affected having a degree of learning and behavioural difficulties, so it’s a huge achievement for Alex to have gotten great results in his GCSEs.
Alex has also recently been approached to take part in a Brain Involvement Research Study to identify which part of the Duchenne disease is responsible for neurological complications. This will help to shape future research and understand more about the mental health side of Duchenne. Alex is already on a clinical trial to help bring an effective treatment to market for the physical aspects, and now he’s helping even further to shape a better future for his disease.
If you’d like to get involved with this fabulous charity, there are many ways to help. You can take part in their events, run your own events, volunteer your time or skills, or join their ‘BeMoreAlex’ campaign and set-up a regular £7 per month giving.
For just £7 a month, you’ll receive postcards from Alex, letting you know what he and the charity have been up to, along with updates on his condition.
To find out more simply visit their website at www.alexswish.co.uk and follow them on social media by searching ‘Alex’s Wish’.