Always on
This project successfully funded on 5th December 2025, you can still support them with a donation.
Duchenne Virtual Ward Project
Leicester, United Kingdom
Aim
Adult care for Duchenne is fragmented. We are fixing this by meeting the general unmet needs of adults when it come to care in Duchenne.
Who are we?
Alex's Wish is a charity dedicated to conquering Duchenne Muscular Dystrophy. A progressive, life-limiting muscle wasting disease that affects 1 in every 3,500 boys born.
We are a family-run charity, set-up by Alex's parents 13 years ago after discovering there is not enough funding going into medical research to find treatments and a cure for those living with Duchenne in the UK.
- There are 2,500 boys living with Duchenne in the UK
- In the UK, every single week, two families will receive a diagnosis of Duchenne
- It affects every single muscle in the body, including the heart and lungs
- Leads to respiratory and cardiac complications
- Life-limiting disease
Alex was diagnosed at just 3 years old, we learnt that Duchenne affects every single muscle in the body - including the heart and lungs. It will change every aspect of daily living, resulting in being in a wheelchair full time by the age of 12 years old. That there were no treatments, or cure to help him and the thousands of others living with Duchenne. We wanted to change that.
Impact
Over the past 13 years, we have raised over £2.6M, and funded 40+ projects. We have supported a project that has gone on to bring a new approved drug to market for everyone living with Duchenne. We are making a big difference, bringing new technologies to market to help improve quality of life, as well as improving the quality of care across the UK.
Our focus, as always is to raise money and:
- Continue to drive better care standards for those living with Duchenne, despite where they live in the UK and whether they are a child or an adult living with the condition. Everyone deserves to receive the best quality of care.
- Continue to invest in new technologies to support boys to live more independently.
- Invest in innovation to bring vital new treatments to market for everyone living here in the UK.
- Work towards finding a cure for all living with Duchenne.
Why are we crowdfunding?
Men with Duchenne are living longer and living more fulfilling lives, thanks to improvements in care. But when they move from paediatric to adult services their care often fails them. And we are going to fix that.
We partner with Duchenne UK, another charity which is run by parents of boys living with Duchenne. We are stronger together. We share the same values. Together, we are raising funds for a project to support patients and ensure they can access the best care across the UK.
We have a target of £80,000 to raise for this project, and this money will be raised through fundraising events we are organising and trusts and foundations - including this crowd funding page.
How we’ll spend the money raised
The money raised will fund a project, that promises to deliver the following benefits to patients:
- To reduce fragmentation of care, reduce urgent hospital admissions and reduce the frequency of premature mortality.
- To improve quality of life for adults with Duchenne, by reducing the burden of travel and improving health and wellbeing.
- To improve communication between specialists, further improving quality of care.
- To upskill local teams.
Mortgage Advice Bureau Foundation has provided £5,055 of match funding
Funding method
Keep what you raise – this project will receive all pledges made