Joining Jack

16/10/2026

Yesterday I went to Birmingham to represent and speak for Duchenne Care UK at the 'Moving the dial on osteoporosis in monitoring and management for Duchenne'.
A huge thank you to every speaker, chair, attendee and collaborator who made yesterday's meeting such an interesting day of discussion, collaboration and learning. We are grateful to Santhera Pharmaceuticals for sponsoring and making the meeting possible.
The programme was comprehensive, and the message that stayed with me is this: the challenge now is implementation. Bringing together early monitoring, timely intervention, growth and puberty management, fracture prevention, transition to adult services and coordinated care throughout life. Together they form a roadmap for better outcomes and better quality of life for everyone living with Duchenne, wherever they receive their care.
What makes this community special is the willingness of clinicians, researchers, industry and families to work together. Yesterday was another example of that collaboration in action and I'd especially like to acknowledge the commitment of healthcare professionals across the UK who continue to improve care for individuals and families affected by Duchenne through engagement in Duchenne Care UK.
As we left Birmingham, the shared determination was clear: keep moving the dial. Not just by discussing best practice, but by embedding it in routine care. Not just by identifying challenges, but by solving them together.
Because every improvement in bone health monitoring, every vertebral fracture detected earlier, every fracture avoided, every better-informed clinical decision translates into something that matters enormously better lives for people living with Duchenne.
Duchenne UK John Walton Muscular Dystrophy Research Centre

12/10/2026

‘Everyone deserves the opportunity to pursue their dreams’ ❤

We wanted to share with you an incredible new documentary - THE POWER WE PLAY - highlighting how powerchair football changes lives.

Ahead of the 2026 (Federation Internationale de Powerchair Football Association) World Cup in Buenos Aires, the World Duchenne Organization in co-operation with Fondazione Policlinico Universitario Agostino Gemelli IRCCS have created the documentary exploring how sport can transform the lives of people living with neuromuscular conditions.

Filmed across Argentina, England and Italy, it follows players from three national teams as they prepare for one of the most important competitions of their sporting careers.

Through personal stories, interviews and moments on and off the pitch, the film reveals a world of determination, friendship, ambition and shared dreams. It captures not only the challenges of preparing for an international competition, but also the profound impact that powerchair football has on the lives of those who play it.

The documentary also echoes the message of World Duchenne Awareness Day 2026, ‘Access Changes Lives’, highlighting how meaningful access can create opportunities, empower individuals and transform lives.

Behind every match are months of training, long journeys, organisational and financial challenges, and the essential support of families, coaches and teammates. And as a family heavily invested in powerchair football, we’re delighted to share the footage.

You can watch the documentary in full here:
https://www.worldduchenne.org/news/the-power-we-play-a-documentary-on-how-powerchair-football-changes-lives/

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29/09/2026

Well done to our very own Jack Johnson for winning standout player for game week 1 of The Wheelchair Football Association National League Championship 👊

We’re delighted to name Atrincham PFC’s Jack Johnson as the Swizzels Standout Player for Gameweek 1️⃣ of the 2026/27 National League Championship! 💥

26/09/2026

A huge thank you to the World Duchenne Organization and the European Medicines Agency (EMA) for inviting me to participate and represent Duchenne UK and Joining Jack in two days of important and thought-provoking meetings in Amsterdam focused on Real-World Data (RWD) collection in Duchenne.

Bringing together multiple stakeholders created a valuable opportunity to have open and constructive conversations about some of the key challenges facing the Duchenne community from clinical development and regulatory decision-making to how we can better harness the potential of real-world data to generate meaningful evidence on medicines for DMD.

What felt particularly important was that this was not simply two days of discussion. It marked the beginning of a longer-term collaboration, with a shared ambition to improve how meaningful real-world evidence is generated and used in Duchenne.

There were so many useful insights, perspectives and key messages shared across the two days. These will now be brought together into a full report, alongside the next steps needed to turn those conversations into action.

We ended with shared commitments from stakeholders and, importantly, a commitment to shared action.

For a rare and complex condition like Duchenne, no single organisation or stakeholder can solve these challenges alone. Progress depends on patients, families, clinicians, researchers, industry, regulators and patient organisations working together and ensuring that the lived experience of people affected by Duchenne remains part of the conversation.

Thank you to everyone involved for the openness, collaboration and willingness to work together. I’m looking forward to seeing where this important work leads.

09/09/2026

⭐14TH WIGAN 10k RAISES A FANTASTIC £50,000⭐

We are over the moon that our second flagship fundraising event of the year, the fabulous 14th HW Moon Toyota Wigan Wigan 10k and Family Mile has raised a fantastic £50,000!

Alongside hundreds and thousands of pounds raised for so many other charities, good causes and organisations, it is an incredible sum for Team JJ and, after the amazing achievements of last year when the 10k team smashed the massive £1/2 million milestone, it sets us well on the way to £1milllion! 💕

A massive well done to everyone who took part on Sunday and thanks so much to all our incredible supporters, sponsors, partners and the super-heroes who make up the JJ Army 💕

Worldchoice Travel Wigan Westwood Motor Group Wigan Council The Bridgeman Physiotherapy Centre Visit Wigan Be Well Wigan The Endurance Store Uncle Joe's Bithells Waste Management Ltd Wigan Council Top Grades Education


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07/09/2026

📢 Introducing the Duchenne Care UK podcast series 🎙️

On World Duchenne Awareness Day (WDAD) we are delighted to confirm the launch of the Duchenne Care UK Podcast Series.

These easy-to-listen conversations, which feel more like a discussion between two friends, bring the guidance developed through Duchenne Care UK to life. They aim to help families understand key aspects of care and navigate important health decisions with greater confidence.

Based on the existing Duchenne Care UK patient and family guides and developed with input from the Duchenne Care UK working groups, the podcasts have been created alongside our charity partners Duchenne UK to break down the information into accessible, short episodes, making it even easier to absorb, revisit before appointments, and refer back to when care needs change or new treatments begin.

You can find and listen to the podcasts via the QR code, on Spotify or here: https://www.duchenneuk.org/support/care/podcast-guidelines

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25/08/2026

Everyone at Joining Jack would like to pay our respects to a sporting icon, Wigan Warriors legend Sir Billy Boston, who has passed away surrounded by his family.

Sir Billy was a fantastic supporter of the charity. He became Rugby League’s first knight earlier this year and was a true hero on and off the field.

Rest in peace, Sir Billy, legend! ❤

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24/08/2026

I’m incredibly proud to have been involved in the development of this important recommendation from Duchenne Care UK. 💙
It’s fantastic to see NICE recognise and review the recommendations on orthopaedic care for people living with Duchenne muscular dystrophy.
What makes this particularly meaningful is the collaborative approach behind it bringing together clinical expertise, patient and family voices, and the wider Duchenne community to develop practical, UK-specific recommendations that can help drive more consistent, high-quality care.
This is now the third Duchenne Care UK clinical recommendation to be reviewed by NICE, following the recommendations on cardiac and respiratory care. It feels like another important step towards ensuring that everyone living with Duchenne can receive the standard of care they deserve, wherever they live in the UK.
I’m very proud to have played a part in this work, and grateful to everyone who contributed their expertise, experience and time. 👏
👉 Read the full story and access the recommendations and Family Guide: https://www.duchenneuk.org/news/third-duchenne-care-uk-recommendation-to-be-reviewed-by-nice

🎉 Another important milestone for Duchenne Care UK!

We’re delighted to share that NICE has reviewed Duchenne Care UK’s recommendations on orthopaedic care for people living with Duchenne muscular dystrophy.

The recommendations aim to help ensure people with Duchenne receive consistent, high-quality orthopaedic care across the UK, covering areas including fracture management and elective orthopaedic procedures.

NICE highlighted the strength of the recommendations, including the involvement of clinical experts and patient representatives throughout their development, as well as strong engagement across the Duchenne community.

This is the third Duchenne Care UK clinical recommendation to be reviewed by NICE, following our recommendations on cardiac and respiratory care.

It marks an important step towards establishing clear, UK-specific standards of care for everyone living with Duchenne. 💙

👉 Read the full story and access the clinical recommendations and Family Guide: https://www.duchenneuk.org/news/third-duchenne-care-uk-recommendation-to-be-reviewed-by-nice

14/08/2026

We are delighted to share our 2025 Impact Report.

Working alongside the national patient charity Duchenne UK, we are driving progress towards a future free from Duchenne.

Last year your support helped us make meaningful strides for everyone affected by Duchenne muscular dystrophy. From investing millions into pioneering research and supporting clinical trials, to providing trusted resources for families and bringing our incredible community together through fundraising events, every achievement has been made possible because of you.

The full Impact Report is now available on our website:

https://www.joiningjack.org/media/duchenne-uk-impact-report-2025.pdf

Massive thanks from everyone at Team JJ to all our fundraisers, supporters, researchers, volunteers, healthcare professionals and partners who have been part of this journey. Your ongoing support is helping to create real momentum for the Duchenne community ❤️

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