A charity has helped transform the support available for families across the UK - thanks to backing from big stars and residents across Wigan.
Charity Joining Jack has helped raise vital funds and awareness for Duchenne Muscular Dystrophy, thanks to its figurehead, Jack Johnson, and his family. Over the years, the charity has seen support from sports stars such as Sam Tomkins and Owen Farrell, with the fingered joining symbol made famous by many top level rugby stars helping bring the charity to the nation's attention.
Jack and his family were all in attendance at Wigan Town Hall today (March 6) as they received a star on the Believe Square walk of fame.
With some of the biggest names in rugby union and rugby league acting as ambassadors to the organisation, Jack's mission to help more fighters like him will continue. Duchenne Muscular Dystrophy is one of the most common fatal genetic disorders to affect children around the world. According to the charity’s data, approximately one in every 3,500 boys worldwide is afflicted with Duchenne Muscular Dystrophy with 20,000 new cases reported each year.
The charity funded 69 research projects and raised around £15 million for clinical trials since it was born in 2012.
Alex Johnson, Jack’s mum, said: “Ten years ago, Andy and I had never heard of Duchenne Muscular Dystrophy and now it is such a big part of our lives. The landscape has completely changed [in the last 10 years].
“When Jack was diagnosed, there were no clinical trials, the focus was on giving the boys the best quality of life and me and my husband decided we wanted to make a change and something happen for the boys. We have now got over 30 clinical trials running in the UK.
“We set up a project called the DMD hub which has established a network for 11 clinical trial sites which are delivering trials to 500 boys - which do give families hope. Jack is on one of the 30 trials at Alder Hey Children’s Hospital that have just presented results of the study and it is showing it is slowing the progression of the disease.
“Instead of the boys stopping walking, they’re walking for longer and they’ve been able to do activities they have previously lost the ability to do. Jack is amazing, he gets on with things and is living his best life.
“He loves school, he coaches rugby which he is very proud of, playing. He’s doing his GCSEs so he could do a little bit more work on his homework if possible - he's a typical 15-year-old boy.
“He understands without us doing this work these opportunities for clinical trials and research wouldn’t happen so he wants to help. He is one of very few boys getting access to these trials.
“He knows a few boys with Duchenne that don’t have this access and that does upset him - he wants to help them to get it as well. Us raising awareness will hopefully lead to them getting access as well.”
Joining Jack was created in 2012 when Jack was diagnosed with DMD. The diagnosis sparked a movement to fund research and raise awareness of the disease, which has touched the lives of many people.
Individuals and organisations who have made a long-standing impact on the local community are awarded stars. Other illustrious recipients of stars on Believe Square include Hollywood actor Sir Ian McKellen, key workers in the Covid-19 pandemic and Olympic athlete Jenny Meadows.
Like many youngsters in Wigan, Jack loves his rugby as well as wheelchair football, in which he plays on a team with fellow Duchenne fighters. As the stone with his star was getting placed alongside other Wigan greats in front of the Life Centre, Jack casually pointed out he’s already met the majority there through his charity work.
Despite being a leading figure in the charity alongside mum, Alex, and dad, Andy, he seems unfazed by the duty on the surface. However, he admitted it can be tough constantly going for treatment to maintain his health.
“This day means a lot to me because it is about 10 years for the charity and putting down the star as we continue to find a cure,” the 15-year-old said. “We want to find a cure for Duchenne because at the moment all these boys around the world need treatment and we just can’t give it to them.
“We are trying and hopefully we’ll be able to find it in the future. I’ve got big exams coming up and it’s a lot to deal with but I am always here for the charity and to help other boys with Duchenne. It has always been about helping them to find a cure.”
Jack coaches a trophy winning rugby team for school and the rugby community has been a big boost for him and the charity. Owen Farrell still joins his fingers for the camera after every try and kick conversion - which is huge in front of millions of Six Nations viewers at the moment.
“It is amazing, every time Owen Farrell does the Joining Jack symbol for England it puts a smile on my face to think he’s thinking about other boys with Duchenne and me,” Jack continued. “It can be challenging to deal with going into hospital but it is important to keep my health good.
“I’m on the clinical trial at the moment and the medicine is really helping, and I think it’s important to get more people on this so they can get treatment to slow down this disease.”
Speaking on the momentous occasion at Wigan Town Hall, council leader Coun Dave Molyneux highlighted how much the charity's symbol remains stuck in the minds of the community.
“I think we all understand running a charity is not an easy feat, and I think today reflects our recognition for everything you’ve done over the last 10 years raising awareness for Duchenne Muscular Dystrophy,” Coun Molyneux said in his speech. “It is exceptional because it is not something that affects Jack’s life, it affects other people’s as well.
“The work you’ve done has achieved so much to support research for the illness. We are also proud of how the rugby family has gotten engaged in what we want to do with Joining Jack and there is no better example than Owen Farrell, captain for England’s rugby union team, who has certainly done the symbol on every occasion he can.
“We just hope he does it a little bit more over the next few Six Nations games because that would make us all feel a little better.”
Coun Molyneux went on to say how this hunt to find a cure is something the council wants to be part of. This is why they have maintained their support for Joining Jack over the last 10 years and will continue to do so.
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