Backing Super Jack

28/06/2026

🧡🧡Duchenne is about so much more than muscles

When most people think about Duchenne muscular dystrophy, they think about muscles and mobility. But something what isn’t talked about nearly enough is the impact Duchenne can have on the brain too.

The protein missing in Duchenne, called dystrophin, isn’t only found in muscles – it’s also found in certain areas of the brain. Because of this, some boys with Duchenne can experience differences in the way they think, learn, process information and experience the world around them.

Research has shown that boys with Duchenne are more likely to have neurodivergent traits and diagnoses such as autism, ADHD, anxiety, sensory processing differences, speech and language difficulties, learning challenges and difficulties with executive functioning, including impulse control.

Every child with Duchenne is unique. Some may experience none of these challenges, while others, like Jack, navigate both Duchenne and neurodivergence every single day.

One of the biggest challenges at this age for Jack is impulse control. Sometimes he reacts quickly, struggles to regulate big emotions, or finds it difficult to stop and think before acting. These moments can be misunderstood by others, but they aren’t about being naughty or difficult. They’re part of the way his brain processes and responds to the world around him.

Understanding the link between Duchenne and the brain has been incredibly important for us. It has helped us realise that some of the things Jack finds difficult aren’t simply behaviours or preferences – they’re part of how his brain is wired.

It also reminds us that when making decisions about treatments, education or everyday life, we have to consider the whole child, not just the diagnosis of Duchenne.

Raising awareness of this side of Duchenne matters because these invisible challenges are often overlooked. Our boys don’t just need support for their muscles – they need understanding, patience and support for their minds too.

To all the families navigating both Duchenne and neurodivergence, we see you. You’re not alone. 💙

28/06/2026

💙 An update on Givinostat 💙

After sharing our excitement when Givinostat was approved, we wanted to let everyone know where things currently stand for Jack.

We were incredibly grateful that Jack was finally recently able to start trying Givinostat, and we went into it with so much hope. Unfortunately, we’ve had to make the difficult decision to pause treatment for now.

As many of you know, Jack is neurodivergent, and introducing something new into his routine can be challenging. The changes around taking the medication and the disruption it brought to his established routines caused him distress and had a bigger impact than we had anticipated, particularly while he is trying to manage the day to day demands of school.

As parents, we’re constantly balancing the potential benefits of treatments with Jack’s overall wellbeing and quality of life. Right now, taking a step back and reducing that distress feels like the right decision for him.

The good news is that this isn’t the end of our Givinostat journey. We plan to try again when the summer holidays begin, when there is less pressure, disruption, and potential impact to Jack at school. We hope that giving Jack the time and space to adjust to the medication in a calmer environment will make the transition much easier for him.

We remain hopeful about what Givinostat could mean for the Duchenne community and for Jack. Sometimes the journey definitely isn’t a straight line, and finding the right timing can make all the difference.

Thank you, as always, for following our journey, for understanding the complexities that come with both Duchenne and neurodivergence, and for continuing to cheer Jack on every step of the way.

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08/05/2026

This is such incredibly welcome news for the Duchenne community 💙

We are so hopeful that this approval will finally mean Jack can access Givinostat through NHS England and benefit from a treatment that could help slow the progression of Duchenne.

Families like ours have waited far too long for opportunities like this. Today feels like a real step forward and gives us renewed hope for the future.

Thank you to everyone who has campaigned tirelessly to make this happen. 💙

On a landmark day for our community, we are delighted to share that the National Institute for Health and Care Excellence (NICE) has recommended givinostat for use on the NHS in England. In final draft guidance issued today, NICE approved the treatment for people with Duchenne muscular dystrophy who are ambulant (able to walk or stand), aged six and older.

After a long and challenging NICE appraisal process that lasted almost two years, and 18 months after the treatment was approved as safe and effective by the Medicines and Healthcare products regulatory agency, this marks a pivotal moment for people with Duchenne.

Today’s news offers real hope for children and young people with Duchenne and their families. It is the culmination of 14 years of work by Duchenne UK, our partners and other organisations, helping to drive advances in research, expand clinical trials and accelerate access to new treatments in the UK.

You can read more about this decision, and what it means, here: duchenneuk.org/givinostat-approved-for-use-in-nhs-england/

15/04/2026

🎉 Jack turned 7! 🎉
On Sunday we celebrated with a family trip to Birmingham’s Utilita Arena to see Hot Wheels Monster Trucks Live, and what a day it was! The roaring engines, the excitement, and Jack’s smile made it truly unforgettable.

Birthdays will always be a little bittersweet for us.
As parents of a child living with Duchenne Muscular Dystrophy, they can be a reminder of how precious time really is. But more than anything, they’re a reason to celebrate even louder, love even deeper, and make as many memories as we can.

Here’s to Jack, to joy, and to every special moment we get to share together 💙