A year of battles and finally a breakthrough
… thank you for the support to reach a milestone moment
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.
Strong cross-party support in Parliament, with MPs challenging the postcode lottery of access, has kept pressure on the Government to act. At the same time, we worked Trust by Trust to secure delivery of the EAP, backed by national and local media coverage exposing the injustice families faced – something Jack took on personally. He wanted his friends to be given the same chance he had. This growing momentum drove change.
* 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 June, Jack and Alex presented at the British Pharmacological Society Annual Conference June when Jack shared his journey with 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! Your support financially and emotionally for my family and Team JJ is what gives us that extra gear when it feels like one step forward and two steps back.
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 and for sticking with us through the tough times, enjoying the highs and supporting the lows.
If you have a minute, please see take a look below at some of our work and achievements in 2025. We hope you have a lovely Christmas and New Year.
Stay safe, see you in 2026,
Alex, Andy, Jack, James & Millie xxxx🐾
NICE recognition for DMD Care's cardiac care, praise from Manchester Mayor and a special shoutout for Derian House
Through Duchenne UK Care, we continued to improve care for people with Duchenne across the UK in 2025. By creating new clinical guidelines and easy-to-use resources for families and healthcare professionals, the programme has helped to ensure better, more consistent care, wherever someone lives and whatever stage of Duchenne they are at.
DMD Care is a collaborative initiative between the John Walton Muscular Dystrophy Research Centre at Newcastle University and Joining Jack, Duchenne UK and the Duchenne Research Fund.
In February, DMD Care UK’s therapy working group launched two new guidance documents – one for healthcare teams and one for people with DMD and their families which gives information about the best standards of physiotherapy and occupational therapy care needed at different stages of the disease.
And on World Duchenne Awareness Day in September, the National Institute for Health and Care Excellence (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.
Last month, our co-founders Alex and Andy, received a letter from the Mayor of Manchester, Andy Burnham, congratulating them on the NICE recognition.
Mr Burnham has been a long-term supporter of Joining Jack, from campaigning and parliamentary support, to being a regular participant in the Wigan 10k. He chaired the first meeting to discuss the huge discrepancies in standards of care for boys living with Duchenne, at a Roundtable at the Mayor’s office in February 2020.
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 with all his recent problems, and we wanted to acknowledge the many little things that the Derian team had provided help with Jack and his family.
Leading the way in virtual healthcare for adults with Duchenne
Alongside our partners Duchenne UK, we are proud to be driving a bold new approach to healthcare for adults living with Duchenne by funding a pioneering virtual care model that brings hospital-level support into people’s homes.
This is something incredibly close to our hearts, with Jack set to celebrate his 18th birthday next month.
Thanks to your fantastic support, we are delighted to reveal that Joining Jack is contributing £441,219 to Years 1 and 2 of this initiative which responds directly to the growing needs of the adult Duchenne community.
As more men live longer with Duchenne, their care becomes more complex. Yet adult services are often less co-ordinated and under greater pressure than paediatric care, leading to poorer outcomes and lower satisfaction.
By funding this initiative, we are demonstrating an ability to respond rapidly to both clinical insight and community need. We are not just supporting innovation, we are leading it. And we’re committed to proving that virtual care can improve outcomes and experience for adults with DMD, while also setting a precedent for wider NHS adoption.
Thank you to our fabulous fundraisers, ambassadors and a magnificent £1/2million moment at the Wigan 10k
Wow! It was another incredible year of fundraising and events for Team JJ.
From the amazing efforts of our lovely friend Michelle Beckett who lost her son, Ryan, another Duchenne Warrior, just a few months short of his 30th birthday raising a fantastic £23,000 and counting, to our record-breaking, milestone-making, £1/2million 13th Wigan 10k in September.
Our first flagship fundraising event of the year, the HW Moon Toyota Wigan Run Wigan Festival raised a terrific £33,000 with a sellout Half Marathon and 5k while we also said a farewell to the playing field to two of our amazing charity Ambassadors and JJ salute specialists, Sam Tomkins and Stefan Ratchford, before celebrating with a third when we marked Josh Charnley's 250th career try framed, of course, with a JJ Salute for his mate.
We had new supporters and fundraisers including the MiRider team celebrating their 5th birthday by choosing Team JJ as their chosen charity, and Alex and the team also met the very kind James Hooton who donated a terrific £2,000 in memory of his son, Stephen, another Duchenne solider.
Our fantastic friends at Develop UK battled torrential downpours at their Ryder Cup-style Charity Golf Day with a star-studded line-up from the world of rugby league, while so many more of our loyal supporters took on their own individual challenges for sponsorship or donated to others raking part in events, including one very special lady, the lovely Rita Skett hanging up her trainers after the recent Wigan 10k.
We can't thank all of you enough! We try to give everyone a shoutout on our social channels and a mention to Fundraisers on our website HERE - please take a look. 👉👈
And finally ... Jack flies through his Driving Theory Test, applies for University and has a starring role in the FA Cup
And last but definitely not least, what a year it has been for Jack!
Celebrating his 17th birthday at the start of the year and applying for his provisional driving licence, he went on to ace his theory test at the first attempt, and has just completed his UCAS application for next September!
He continues to fly the flag for Power sports in 2025, starring in Power Hockey with the Greenbank Bears. He has also been involved with helping to grow the sport by raising awareness, attending taster days and assisting new players to help them get to grips with the game he is so passionate about.
Jack also seized the opportunity to sign for a new football team Altrincham FC in August, meaning that he now plays in the Championship, a move which he has been so excited about.
This month he also played in the FA cup picking up a MOM award.
