Joining Jack is a founding charity partner of Duchenne UK. Joining Jack and the Duchenne Children’s Trust came together in 2016 to form Duchenne UK, a charity dedicated to funding and accelerating research and treatments solely for Duchenne muscular dystrophy (DMD).

Joining Jack and the Duchenne Children’s Trust have spent more than £4 million in the last three years on direct grants for research and clinical trials, and have now come together to form Duchenne UK, to drive momentum to delivering treatments to help this generation of those with DMD.

The Joining Jack charity was founded in 2012 by Alex and Andy Johnson, after their son Jack, then aged four, had been diagnosed with Duchenne muscular dystrophy six months earlier.

Andy, a former professional rugby league player with his home town club Wigan, was determined he wasn’t going to take Jack’s diagnosis lying down and, fuelled by Alex’s single-minded determination to find a cure for their beautiful son, the couple garnered support from their friends and family and the local sporting communities, and Joining Jack was born.

An incredible response from Andy’s former team mates including dual international and former England rugby union coach Andy Farrell and Wigan general manager Kris Radlinski, saw the now familiar Joining Jack salute, more recently adopted by Owen Farrell for the national side in the Six Nations Grand Slam success earlier this year, become a call to arms for a growing army of supporters. The support snowballed and Andy and Alex’s voices grew stronger.

When cycling legend Sir Bradley Wiggins stood on the podium as the Tour de France winner in Paris and performed the salute a few months later, the charity’s already growing profile was catapulted on to the international stage and the Duchenne community had a voice.

Since then the charity has raised more than £2 million which has been used to fund research into treatments for Duchenne.

Flagship fundraising events include a hugely popular 10k race (created from start to finish by Andy’s brother and Jack’s uncle, Matt Johnson) with more than 3,000 runners descending on Wigan town centre on a sunny Sunday morning in September. The charity also takes team of former internationals of both rugby codes to compete in the Emirates Dubai Sevens in December. And the fundraising efforts continue to grow – plans are already in the pipeline for a second running event and a bike ride in 2017.

As well as fundraising and increasing awareness, Alex has become a powerful voice in the Duchenne community. Joining Jack has worked very closely with the Duchenne Children’s Trust; campaigning for earlier access to medicines, investment in a hugely promising gene therapy programme which could help all boys with Duchenne and co-ordinating large numbers of charitable organisations and families to fund clinical trial posts which bring treatments and an eventual cure one step closer to market.