Wigan mum who set up charities after son's diagnosis gets OBE from King Charles III

Alex Johnson founded charity Joining Jack in 2012 with her husband, former Wigan Warriors player Andy Johnson, after discovering their son Jack had Duchenne muscular dystrophy.

They went on to organise some of Wigan’s leading mass participation events, including the Wigan 10k, Run Wigan Festival and Wigan Bike Ride, and raise millions of pounds for vital research into the condition.

The charity has received the support of many famous faces, primarily rugby league players, who are regularly seen doing the “Joining Jack salute” in televised matches.

Alex also founded Duchenne UK, a national patient organisation for people living with Duchenne, and is a board member of World Duchenne Organisation.

She opened a letter informing her she would be honoured for services to charity and people with Duchenne muscular dystrophy as she returned home after completing the Duchenne Dash, a 300km bike ride from London to Paris in 24 hours.

Alex said: “I was absolutely broken by it, I was exhausted, and I got this letter when I got home. The timing of getting that letter was amazing, because I was feeling absolutely broken. It was amazing to think that people had thought of me.”

She said she was “really shocked” to receive the letter and only knew the honour had been confirmed when she received a phone call from the Wigan Observer on Friday!

Jack, who is now 15, was “really impressed” with the OBE, which comes just a month after he and Alex attended the King’s coronation.

Alex, who is also mum to James, said: “I know this OBE has been given to me, but I really feel quite bad about that because it’s not just me – there’s my husband, my family and friends, there’s the whole community in Wigan, the rugby league community, the Duchenne community.

"It’s for everybody for highlighting the work that we have done trying to get the best care and treatments for everyone living with Duchenne.”

Alex’s work over the past 11 years has led to the creation of a network of clinical trials across the UK, helping to fund 34 posts for doctors and nurses, guidelines for care for Duchenne patients and research into how technology can help patients.

She has pushed her own body to the limit by taking part in physical fund-raising challenges to raise money, including the Wigan Bike Ride on Sunday.

Alex thanked everyone who had been involved in some way, including by taking part in the runs and bike rides or raising money in other ways.

She said: “We are so grateful to everybody that has supported us. Without them, I would not have been able to achieve what I have done.

"We have been able to fund clinical trials for drugs for Duchenne which are now being delivered to Duchenne patients. Hopefully we will have approvals for new drugs in the next years.

"Jack has got in a trial and tested medication. When he was diagnosed, we were told to take him home and give him the best life we could. We have managed to change it and get medication for him and all the other boys.”