A year of battles and finally a breakthrough

Merry Christmas to all our amazing supporters from the Joining Jack team, me and Andy, Jack and James, and not forgetting Millie.

As we count down to the big day and look back on another year of fundraising, campaigning, research and care, we wanted to reach out to you, our incredible supporters and followers, with an update on where we are as a charity. We are fighting on many fronts to give our son and ALL boys living with Duchenne a better life and a chance at beating this horrible disease, or at the very least, slowing it down to identify better care, treatments and one day, ultimately, a cure.

Looking back 12 months to December last year, we received the fantastic news that the Medicines and Healthcare products Regulatory Agency (MHRA) was to approve givinostat, for all people with DMD aged six and older. It was another huge milestone for the Duchenne community and something very close to Jack's heart.

Jack had already taken part in two tough clinical trials before starting the treatment for givinostat at the age of 12, an age at which many boys with Duchenne typically can stop walking.

With data showing that the drug was slowing down the progression of the disease, it wasn't a cure but it bought us some more time. Jack stabilised and managed to continue walking until he was 16. We thought Christmas had come early for Duchenne families – we had no idea about the battle ahead.

Over the past 12 months, working alongside our partners and the national patient charity Duchenne UK, it has been a battle, one we were determined to win. We have held two drop-in events in Parliament, met with more than 35 MPs and peers, and successfully influenced 19 NHS Trusts on access to givinostat.

Accelerating access to treatment has always been at the heart of our mission to end Duchenne, but at the start of 2025, despite MHRA approval and givinostat being available FREE through the Early Access Programme (EAP), no patients were receiving it.

The Time is Muscle campaign changed that. By the end of this year, 20 out of 24 NHS Trusts had started treatment for more than 200 patients, with more preparing to roll out following NICE approval. Working alongside NICE, this month we have secured full NHS funding for all eligible patients, ensuring long-term access to this important therapy.

In January and October, we held drop-in events in Parliament and met with more than 35 MPs and peers. In March, the first boy with Duchenne in the UK received givinostat through the Early Access Programme. In May, Duchenne patients in Scotland received access to givinostat. In August, Bristol Children's Hospital began treatment. In October, hospitals across Birmingham were rolling out givinostat, bringing hope to more families. In November 2025, NICE issued draft guidance approving givinostat, requiring all remaining Trusts to make it available within three months under the NHS Constitution.

In December, a major breakthrough for families in Scotland, as the Scottish Medicines Consortium (SMC) approves givinostat for use on the NHS in Scotland.

The success of our campaign was powered by the strength of our entire Duchenne community. Families, friends, and supporters came together, engaging political representatives, speaking to the media, and bravely sharing their stories, to turn advocacy into action and drive real change for everyone affected by Duchenne.

200 patients and more each day are now receiving givinostat, the first treatment shown to slow down progression of DMD in clinical trials. And that is thanks to you!

Through Duchenne UK Care, we continued to improve care for people with Duchenne across the UK in 2025. In February, DMD Care UK's therapy working group launched two new guidance documents. On World Duchenne Awareness Day in September, NICE recognised DMD Care UK's guidelines for cardiac care and found them to be 'a useful resource that will help clinicians improve care in this area.'

The year also saw the release of a new Derian House documentary, The Little Things, on Amazon Prime. Over the summer holidays Jack goes to weekly hydrotherapy and complementary therapy which has really helped him, and we wanted to acknowledge the many little things that the Derian team had provided.

Thanks to your fantastic support, we are delighted to reveal that Joining Jack is contributing £441,219 to Years 1 and 2 of a pioneering virtual care initiative for adults living with Duchenne, bringing hospital-level support into people's homes.

From the amazing efforts of our lovely friend Michelle Beckett raising a fantastic £23,000, to our record-breaking, milestone-making, £1/2million 13th Wigan 10k in September — it was another incredible year of fundraising and events for Team JJ.

Our first flagship fundraising event of the year, the HW Moon Toyota Wigan Run Wigan Festival raised a terrific £33,000. We also said farewell to two of our amazing charity Ambassadors and JJ salute specialists, Sam Tomkins and Stefan Ratchford, before celebrating when we marked Josh Charnley's 250th career try.

And last but definitely not least — what a year it has been for Jack! He aced his driving theory test at the first attempt, completed his UCAS application, and starred in Power Hockey with the Greenbank Bears. In December he also played in the FA Cup picking up a MOM award.

We close 2025 with two approved treatments, givinostat and vamorolone, bringing new hope to families affected by Duchenne. Thank you to everyone who has helped us to come such a long way.

Stay safe, see you in 2026. Alex, Andy, Jack, James & Millie xxxx 🐾