Wigan-based charity Joining Jack has contributed to a £1.2m investment to support clinical trials into genetic disorder Duchenne muscular dystrophy.
The organisation, which was inspired by eight-year-old Jack Johnson and is behind Sunday’s Wigan 10k, gave £174,000 to back research into the condition.
We are funding for two years a clinical fellow - a doctor - who will focus on conducting clinical trials. Also as part of the clinical trials, the children are put through different physiotherapy assessments so we have found a physio as wellAlexs Johnson
Money from eight patient organisations is being used to fund 16 clinical posts at Great Ormond Street Hospital in London, The John Walton Muscular Dystrophy Research Centre at Newcastle University and Alder Hey Children’s Hospital in Liverpool.
It follows a meeting in Newcastle in July last year after Joining Jack and the Duchenne Children’s Trust discovered that leading clinics were turning trials away because of a lack of doctors and nurses.
They organised the Newcastle Plan to address the problem.
The funding was put together in just six months and the new clinical posts were created.
Jack’s mum Alex Johnson said: “We identified a number of posts nationally but Joining Jack specifically supported posts at Alder Hey Children’s Hospital.
“We are funding for two years a clinical fellow - a doctor - who will focus on conducting clinical trials. Also as part of the clinical trials, the children are put through different physiotherapy assessments so we have found a physio as well.”
It is hoped that more clinical trials involving Duchenne muscular dystrophy will now be able to take place.
The genetic condition is an incurable muscle-wasting disease which affects around 2,500 boys and young men in the UK.
Mrs Johnson said: “We are hoping it will increase the capacity for the sites to be able to conduct more clinical trials and give the children access to clinical trials that they need.
“At the moment there are no treatments for Duchenne and the best way for these kids to get access to the drugs is to take part in a clinical trial.”
The other organisations providing funding are: Duchenne Children’s Trust £368,000; MDUK £361,000; Harrison’s Fund £236,000; Action Duchenne £47,000; Duchenne Now £30,000; Duchenne Research Fund £30,000 and Alex’s Wish £28,913.
Mrs Johnson added: “I’m really proud of the initiative and I really hope that it leads to more opportunities for children to get these drugs quicker.”