THE mum of Joining Jack inspiration Jack Johnson hopes a £1million investment made by the charity this year could lead to a cure for every child suffering with Duchenne muscular dystrophy (DMD).
Jack’s parents, former Wigan rugby player Andy Johnson and wife Alex, set up Joining Jack in 2011 to find a cure for DMD after his diagnosis.
This year the charity has made great strides in both its funding and raising awareness of the terminal, muscle-wasting illness which, in the last week alone, has taken the lives of four people; the youngest an 11-year-old boy and the oldest just 28.
While 2015 has brought more despair and tragedy to the Duchenne community, it has also brought hope.
With money raised from its army of supporters, Joining Jack has been able to fund a gene therapy project which offers the potential of delivering a fully functional dystrophin gene to muscles.
“We’ve given over £1million and this could ultimately lead to the cure to Duchenne for every single child living with it,” said Alex.
“When Jack was diagnosed there was research happening. It was exciting and there was hope. But over the last few years that hope has become realistic. It just shows how things have changed and I think we’ve played an important role in driving forward the advances that are happening, pushing the regulator to have a more flexible approach.
“We’ve made sure that money is available so that this can happen faster because that is the biggest hurdle we’re up against; time.
“It takes 10 to 15 years to develop a drug from start to finish and we haven’t got 10 to 15 years.”
Alex herself has become a prominent figure in helping speed up the time that drugs are released to terminally ill patients.
“We need to move all the barriers we can out of the way to get the drugs to the boys as quickly as possible,” she said.
“The big thing we want to do is improve the clinical trial infrastructure in the UK. We’ve got the drugs coming through but we’ve not got the doctors, nurses and physios there to be able to administer the drugs in clinical trial settings.”
Jack Johnson was the guest editor for this week’s Wigan Observer, in which he has exclusively interviewed Wigan Warriors star Josh Charnley