Mum of Wigan battling Joining Jack star issues tearful positive update on latest clinical trial

The mum of Wigan youngster Jack Johnson – the inspiration for a major charity appeal – has issued a positive update on the results of a clinical trial.
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Jack,14, suffers from the incurable and life-limiting Duchenne Muscular Dystrophy (DMD) and has been testing a new drug called Givinostat at Alder Hey Children’s Hospital.

The study by the Italfarmaco Group was to determine its effects on slowing disease progression in DMD boys aged six years and above on chronic steroids who are able to walk.

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The trial recruited patients globally, including in the UK through the DMD Hub which charity Joining Jack has helped to fund, and was delivered at four sites also funded by it and Duchenne UK in Newcastle, Alder Hey, Oswestry and Great Ormond Street Hospital.

Jack Johnson undergoing the clinical trialJack Johnson undergoing the clinical trial
Jack Johnson undergoing the clinical trial

Jack’s mum Alex Johnson has shared the news that the trial has yielded positive results and said the call “made her cry in Asda car park.”

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A post by on the charity’s social media page said: “Since Jack’s diagnosis there have been moments that have been permanently tattooed on me, like the heavy rain pouring down on us when we left the clinic after receiving the news of Jack’s devastating diagnosis.

"I remember thinking rain harder, I don’t care how hard it rains nothing was ever going to hurt me more than the news we had just received.

Jack undergoing testsJack undergoing tests
Jack undergoing tests
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"We’ve learnt to live with the heartache of watching social media as we have learnt of clinical trial failures and deaths of precious and much-loved members of our community. I don’t forget any of them.

"When I got the call, my legs went from under me. I ended up sat on the floor of Asda car park in Wigan looking up at the glorious sun and clear blue skies and I began to cry as I thought of everything that we have been through in the past 10 years.

"The blood sweat and tears that got us to today. At times I haven’t been able to tell people the true toll it’s taken on us all physically and mentally.

“My last blog was about Jack being on a clinical trial and how hard it was to make the decision to put him on.

Jack Johnson has been undergoing a clinical trialJack Johnson has been undergoing a clinical trial
Jack Johnson has been undergoing a clinical trial
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“He has been truly incredible and has taken it all in his stride with a big smile on his face and has willingly complied with every test – there have literally been hundreds.

The data the trial has generated has shown that the drug Jack is taking is slowing down the progression of the disease.

"It’s pushing back the feared milestones of losses we know lie ahead. It’s not a cure but it’s a step in the right direction and everything we have all been working for."

Based on the study results, which show the clinical benefits for the individuals in the study, the company plans to meet with US and EU regulators to discuss the potential for marketing application submission and seek input on regulatory approval.

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Alex added: “For us, we will continue to search for new treatments to help Jack, but this is also the beginning of a new journey to help other people living with Duchenne to get access to the drug that’s helping him now.”

"We don’t know how long regulatory approval will take and whether we can get the drug reimbursed but armed with this data set we will help every step of the way to get a treatment for everyone living with Duchenne.

“Today, I quite simply want to say thank you to you all for joining Jack and helping us find a treatment for Duchenne. Please continue to support us on our journey.”

To follow Jack’s journey follow their Facebook page: https://www.facebook.com/JoiningJack