Fund-raiser Alex honoured by PM

A mum inspired by her young son to set up two charities and fund research into an incurable disease has been recognised by the Prime Minister.

Wednesday, 15th November 2017, 10:47 am
Updated Tuesday, 12th December 2017, 10:22 am
Alex Johnson and Jack

Alex Johnson founded Joining Jack with husband and former Warriors player Andy after their son Jack, now nine, was diagnosed with Duchenne muscular dystrophy.

She went on to set up Duchenne UK with Emily Crossley, the founder of another charity and mum of a boy with the condition.

Now, the pair have been named as recipients of the Points Of Light award, which recognises outstanding volunteers.

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Andy and Alex Johnson with Jack

In a personal letter to Mrs Johnson, Prime Minister Theresa May wrote: “Through your inspirational fund-raising and advocacy, you are helping to advance new research into Duchenne muscular dystrophy.

“You should be incredibly proud of your response to Jack’s diagnosis: first by setting up Joining Jack with your husband, and then last year through your partnership with Emily Crossley creating Duchenne UK.

“Each day, your work together is helping researchers to move one step closer to finding a cure to this debilitating illness.”

The women were the 828th and 829th winners of the Points Of Light award, which was established by President George H W Bush in 1990 and launched in the UK in 2014.

Andy and Alex Johnson with Jack

Volunteers are recognised for an array of reasons, from tackling knife crime to supporting people with dementia.

Mr and Mrs Johnson created Joining Jack to fund research into the muscle-wasting disease.

Thousands of people have taken part in key fund-raisers such as the Wigan 10k and Wigan Bike Ride.

Duchenne UK was created in 2016 to find a cure for the disease. The charity has funded three clinical trials and 13 research projects, co-funds 16 clinical trial staff, and spent £4m on direct research grants.

In a joint statement, Mrs Johnson and Ms Crossley said: “We feel honoured to receive this award from the Prime Minister’s office, in recognition of our fight to accelerate the search for treatments and a cure for Duchenne muscular dystrophy.

“We’d like to dedicate it to our sons Jack and Eli and the hundreds of thousands of patients and their families, bravely surviving the brutal daily reality of Duchenne.

“We started out on this journey to save our sons: we’re now fighting to save an entire community. We don’t believe in miracles, but we do believe in science and research and in the power of organisations like ours to really move mountains.”