Spring Social

Spring Social Talk

We held our Spring Social on 26th March, it was great to see you all there!

Over the years, we’ve learnt a lot about Duchenne, the impact of this horrible disease, the problems with care, the lack of treatments, the inaccessible world we live in, the incredible community who supports one another – and the sheer determination of families fighting for change.

We push hard every single day, working with our tiny team, trustees and ambassadors to deliver events that are filled with love and joy. It’s important that our activities raising money, brings happiness and fun into your lives. 

Our focus is always to invest in innovative treatments, we hear on the news of drugs being made available to many diseases especially with gene therapy bringing with it medical breakthroughs – we feel it’s a time of optimism, progress and innovation.

So far since we set-up Alex’s Wish 13 years ago, we’ve raised almost £2.9M – the first million raised took us 7 whole years, the second 4 years, and we’re on track for our third million to take just 3 years – a milestone we hope to achieve by the end of this year. That’s a great success story, one that is filled with hope and optimism, especially when we were told in those early days, it will be so much harder to raise money after the first 2 years.

For those who continue to donate monthly, to the foundations who put faith in us and give us funds to invest wisely and make a difference, to those who come to our events, take on challenges, push themselves outside their comfort zone, thank you.

We know you are not affected by Duchenne in the same way we are, but you care – and you support us – so thank you.

Every single penny adds up and makes all the difference. And over the past 12 months alone, we have given £358K towards four important projects. 

Virtual Hospitals Project – £80K

Men are living longer fulfilling lives now, thanks to improvements in care, come about from the hard work charities like Alex’s Wish do, but when they move from child to adult services their care often fails them. And this project is going to help fix that. A bold solution – developing a novel model of care within the NHS that brings a complex multi-disciplinary monitoring to the patient’s home. Reducing fragmentation of care, urgent hospital admissions and saving lives. We are so proud to be able to support this initiative. 

Therapeutic Grant Call – £200K

A project looking at a transformative innovative gene editing therapy which aims to permanently delete a mutation hotspot in the DMD gene, restoring it and enabling a protein much like that found in Beckers Muscular Dystrophy – a milder form of MD. This means Duchenne becomes more like Beckers, where disease progression is much milder, leading to better patient outcomes, improved quality of life and life longevity.  

Transitioning Project at Leeds Hospital – £30K

The transition period of moving from children’s services to adults’ services is fraught with problems – I know as both Alex, and I have recently been through this process. At times you feel you are pulling your hair out, waiting for important appointments to come through, and having to chase – and chase – time and time again. But not just on the medical side of things, but the psychosocial side of things, they are expected to be adults and lack the support they need to move into adulthood whilst living with a complex medical condition – a condition they know is relentless and continues to get worse over time. This project will create resources (practical tools, guides and models) and support systems that ensure a smoother, more effective transition into adult care, providing both medical and psychosocial support.

ELEVEX Suit – £48K

Thanks to The Brothers Trust, who has recently given us this money to support the ELEVEX Suit – we have over the past few years given quarter of a million pound to this important new technology.  By the end of this year, the suit will move from prototype and into production – giving boys who have lost their ability to use their arms due to muscle weakness, more independence. Being able to drink from a cup, support their arms whilst gaming and working on their computer – this technology is going to make a big difference to the Duchenne community.  We are so excited to see this technology come to fruition.

Update on Alex

Our plans for 2026

If you would like to get involved, volunteer, come to an event, or take on a new challenge – we would be delighted to welcome you on board and will support you every step of the way.