Alexandra Johnson

10 year challenges

Fundraising for JOINING JACK
raised of £1,500 target
by 31 supporters

Verified by JustGiving

RCN 1148156
We are raising much needed funds to help fight Duchenne Muscular Dystrophy


I said I would never do it again but I have decided to climb the Yorkshire 3 Peaks (26 miles). I've manage to rope in my friends Louise and Lisa to get me through the challenge. We have also decided to do the Wigan Bike Ride (50 miles), Wigan 10k and the half marathon next year. I don't think they know what I have signed them up for!

We are doing these challenges to celebrate Joining Jack's 10 year anniversary. I still can't believe it’s been 10 years since Jack was diagnosed with Duchenne Muscular Dystrophy (DMD). Back then, Andy and I were overwhelmed. Overwhelmed and terrified of a future that neither of us had planned or were remotely prepared for.

One thing we definitely weren’t prepared for, was the amazing young man Jack is growing up to be.

It’s difficult for him being a teenager at high school and using a power wheelchair. At a time when you are desperate to fit in, you stand out as being different. But rather than hide away, Jack has thrown himself into living his best life, from coaching his rugby team, to becoming clubman of the year at his little brother’s rugby club, to representing his year on the school council and even taking part in the school drama show and singing in the choir.

He continues to show unbelievable strength, resilience and commitment taking part in his clinical trial. We hope to be able share more on his progress next year. 

So, led by Jack’s example we have come together with Duchenne UK to build movement: a communal endeavour to change the world in the only way it can be changed. With grit, determination, resilience, courage and a fearless ambition to attain the unattainable.

We create. And we innovate. And you are seeing real life examples of our ground-breaking work .

As we enter the era of ‘levelling up’ and integrated care, Joining Jack and Duchenne UK are pushing at the forefront of what is possible.  

Through our flagship DMD Hub program, we are investing in creating sustainable infrastructure to not just bring the best care to all DMD patients in the UK, but to make sure those patients can access clinical research.

We have launched our DMD Care UK project, which is putting research at the heart of care to ensure all DMD patients - regardless of where they live - will receive the best care. This has never been done before.

In fact, a lot of what we do has never been done before! Look at the work we did to bring together competing pharmaceutical companies to work together in the space of health technology, creating the award-winning global collaboration Project HERCULES. 

The research we have funded is bearing fruit – you will read about the successful Phase 2 trial results of Vamorolone, a steroid alternative that we funded in 2014. And the exciting work in gene therapy continues, with the first DMD patient being dosed in a gene therapy trial in the UK THIS YEAR!

And next year we will have exciting news about the Dream Wheelchair we are working alongside Whiz Kidz to develop.

Thank you for taking the time to support us on our journey. We need to go further than anyone has gone before to find effective treatments. This means setting our ambitions high and overcoming every barrier in our way.

We are going to do it faster, because this generation of people living with DMD can’t wait.

The only way we can achieve this is together. We create a network of mutual support for Duchenne families. We collaborate with scientists and the pharmaceutical industry, bringing them together to share knowledge. And we work with health services so that patients get the care they need.

Thank you for supporting us on our journey, and our fight against Duchenne.

About the charity


Verified by JustGiving

RCN 1148156
Joining Jack has the ultimate aim of finding a cure for Duchenne Muscular Dystrophy, one of the most common fatal genetic conditions in the world. Recent scientific breakthroughs mean that the development of a treatment is closer than ever, and this will not only help Jack but all sufferers of DMD.

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