Joining Jack News
Givinostat approved for use in NHS England
On a landmark day for our community, NICE has recommended givinostat (brand name Duvyzat) for use on the NHS in England for ambulant patients aged six and older.
The Promise from a powerful friendship
Our co-founder Alex Johnson and Emily Reuben from Duchenne UK feature in Rare Revolution magazine's Summer 2025 edition.
Jack's Power Hockey team in Grand Final spotlight
A huge well done to main man Jack and his Greenbank Power Hockey Team for showcasing the sport at half time of the Wheelchair Super League Grand Final!
The 13th Wigan 10k raises £55,000 for Joining Jack
We are absolutely thrilled that the thumping 13th HW Moon Toyota Wigan 10k and Family Mile raised an incredible £55,000 — the biggest total since 2016.
NICE recognises DMD Care UK's clinical guidelines for cardiac care
On World Duchenne Awareness Day, NICE reviewed DMD Care UK's cardiac care guidelines and found them to be 'a useful resource that will help clinicians improve care in this area.'
Action from British Power Hockey League
We wanted to share some amazing footage of the main man Jack from the Southern Conference of the British Power Hockey League in Gloucester.
A huge thank you to everyone who attended the New Horizons Conference — an incredible event with people coming together as a community to end Duchenne.
RWF '25 raises £33,000 for Joining Jack
WOW! What a fantastic day at the 2025 HW Moon Toyota Wigan Run Wigan Festival — our biggest numbers since the inaugural event and an incredible £33,000 raised for Team JJ!
Face to face with the Secretary of State for Health
It's not every day that patients with a rare disease get to have face to face time with the most powerful person in healthcare in Britain.
MHRA approves givinostat for all people with DMD aged six and older
We are overjoyed at the decision by the MHRA to give approval to Duchenne muscular dystrophy treatment givinostat for patients aged six years and older.
New Medicine for DMD, Funded by Joining Jack and Patient Groups
NICE has approved vamorolone for use on the NHS to treat Duchenne muscular dystrophy — the first approved treatment in the UK for all patients with DMD, regardless of mutation.
Yet again Jack's surprised us and got better GCSE results than we ever expected him to. He's smashed his drama, photography and design technology.
Jack finishes top scorer for the 2024 Power Chair Hockey Season
Massive congratulations to Jack finishing top scorer for the 2024 Power Chair Hockey Season — the standout player in the competition.
12th HW Moon Toyota Wigan 10k raises £50,000
Our terrific 12th HW Moon Toyota Wigan 10k and Family Mile raised an awesome £50,000 — our highest fundraising total since 2017!
Joining Jack featured in 'The Story of the Emirates Dubai 7s, From Far & Wide' — including footage from the JJ Legends trip where coach Jack tells the team 'he's heart and they are the legs.'
Jack Johnson, Wigan Warriors, Media Assistant, Work Experience
Jack documented his work experience with Wigan Warriors through team blog posts — learning social media, graphic design, and interviewing England rugby league players.
Jack '007' Johnson goes to prom in a DB12
Jack arrived at his leavers' prom at St Peter's Catholic High School in a very special set of wheels — an Aston Martin DB12!
Duchenne Siblings research survey and focus group
Newcastle University invites siblings of individuals with Duchenne, aged 11–17, and caregivers of children with Duchenne to take part in a research survey and focus group.
Jack and Team JJ were invited by Wigan Council to the All Stars Celebration marking 50 years of Wigan Borough.
St Peter's Catholic High School lift the National Schools Rugby trophy
A massive well done to James (Jack's little brother) and the St Peter's Year 7 team lifting the National Schools Rugby trophy in the curtain-raiser before the Challenge Cup Final at Wembley.
HW Moon Toyota Run Wigan Festival '23 raises £30,000
Our biggest event since 2018, doubled last year's total raising an awesome £30,000 — with more than 2,500 runners taking part in the Half Marathon, 5k and Family Mile.
Our co-founder Alex is presented with OBE by the Princess Royal
Co-founder Alex Johnson received her OBE from Princess Anne, the Princess Royal, at Windsor Castle.
200 guests welcomed to New Horizons conference
We were delighted to welcome over 200 guests to New Horizons — a brilliant gathering of the Duchenne community with experts from across the globe.
£1 million to fund the next three years of DMD Care
To mark Rare Disease Day 2024, Joining Jack alongside Duchenne UK and The Duchenne Research Fund are pledging £1 million to fund the next three years of DMD Care UK.
First treatment for all patients with DMD approved in UK
The MHRA has approved vamorolone (Agamree) for the treatment of DMD in patients aged four years and older — the first treatment approved for all people with DMD, irrespective of mutation.
Emirates Dubai 7s 2023 raises £200,000
We are absolutely thrilled to confirm that the JJ Legends return to the Emirates Dubai 7s raised an incredible £200,000 — our highest ever total.
New, decentralised study to validate new, home-based video assessment of DMD
Duchenne UK and Aparito announce a new study to help validate the DMDhome digital platform — using video capture and computer vision analysis to measure limb function in DMD.
Santhera has applied for marketing authorisation to the European Medical Agency for vamorolone, with UK MHRA approval also being pursued.
A partnership with Whizz-Kidz and University of Edinburgh won £1 million from People's Postcode Lottery Dream Fund for innovative wheelchair development.