'You joined our fight and helped us move mountains': Wigan mum's thanks as charity Joining Jack reaches 10th anniversary
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Alex Johnson and her husband Andy – a former Wigan Warriors player – decided to form Joining Jack in 2012 after their son Jack was diagnosed with Duchenne muscular dystrophy (DMD).
Before that, they had never heard of the incurable muscle wasting disease, which affects around one in every 3,500 boys worldwide.
But that diagnosis led the couple to find out all they could about the disorder and what they could do to help their son and all the other people diagnosed with it.
Over the past 10 years they have been dedicated to raising as much money as possible to fund research into DMD and have now collected more than £2.5m.
They have organised some of Wigan’s largest mass participation sporting events, with thousands of people taking part in the Wigan 10k, Run Wigan Festival and Wigan Bike Ride over the years.
Jack, now 14, has been the official starter for many of these events, encouraging participants at the start line, and has even taken part in some of them himself.
The sporting community has really thrown its weight behind the charity, with famous faces spotted doing the “Joining Jack salute” including rugby players Josh Charnley, Owen Farrell and Sam Tomkins.
They have also taken part in physical challenges to raise money for Joining Jack, including the Dubai Sevens rugby tournament, a team of “legends” taking on the Wigan Bike Ride and several rugby stars cycling L’Etape du Tour – one stage of the Tour de France – with support from Sir Bradley Wiggins and his wife Cath.
Several well-known people have taken part in the Wigan 10k, including TV presenter Kirsty Gallacher and Greater Manchester Mayor Andy Burnham, while Wigan Olympian Jenny Meadows and Sir Bradley Wiggins were also among the race starters.
And Warriors legend Martin Offiah has taken part in several television shows to raise money for Joining Jack.
Many smaller fund-raisers have also taken place over the past decade, as people across the borough and further afield took Jack into their hearts and did what they could to help.
Then-Prime Minister David Cameron lent his support to the charity, when he heard about its work during a visit to Wigan in 2013, and Jack was guest editor for a special edition of the Wigan Observer in 2015.
Just a few months ago, a star was unveiled on Believe Square, in Wigan town centre, in honour of Jack and everyone at Joining Jack.
The money raised by Joining Jack is making a difference and is being spent on research, including paying for medical staff and running clinical trials.
Jack is now on a clinical trial which appears to be slowing the progression of the disease.
This research will help not just Jack and his family, but everyone affected by DMD in years to come.
While there is not yet a cure, maybe one day the money raised in Wigan will help to find one.
Jack’s mum Alex has written about the family’s experiences over the last 10 years and praised Wiganers for all the support they have given.
She said: “Before Jack’s diagnosis we had never even heard of Duchenne muscular dystrophy, which is a devastating muscle wasting disease.
“But it is now very much part of our lives. We had a choice 10 years ago – to accept the disease and what it would do to our son or to fight it. And we chose to fight.
“But we weren’t alone in our fight. The town of Wigan came together to support Joining Jack.
“You have supported us over the last 10 years with raising awareness, fund-raising, lobbying and investing in research to bring the best possible treatments with the best possible outcomes to everyone suffering with Duchenne.
“You have helped us fund and develop 69 research projects
“We came together with the Duchenne Children's Trust to form Duchenne UK, becoming the largest funder of Duchenne medical research in the UK.
“Through DMD Care UK, we have transformed the care of patients in the UK.
“Supported the development of the first steroid alternative drug to go into a clinical trial and now go for regulatory approval.
“Seen the first UK patient EVER dosed with a gene therapy because of our funding.
“Set up the DMD Hub which funded 34 posts of doctors, nurses, physios and co-ordinators, that developed 11 hub clinical trial sites and led to over 500 boys being placed on clinical trials.
“We were told 10 years ago there was no treatment for Jack and to take him home and care for him the best we could.
“But you helped change that.
“Jack is lucky enough to be one of those 500 boys on a clinical trial.
“The data from the drug he is testing is looking promising. It’s slowing the progression of the disease.
“We can never thank everyone enough for answering our call to join our fight to end Duchenne.
“You joined our fight and helped us move mountains to help find a treatment for Jack and hundreds of thousands of boys like him.
“We hope you will continue to join our fight to help get all the others boys that desperately need a treatment get access.
To find out more about Duchenne muscular dystrophy and how to support Joining Jack, go to joiningjack.org