Duchenne UK

828. Emily Crossley (London)
829. Alex Johnson (Preston)

Emily Crossley and Alex Johnson, from London and Preston, have raised £5.5m with their organisation ‘Duchenne UK’ which funds research into Duchenne muscular dystrophy.

Alex created ‘Joining Jack’, after her son Jack was diagnosed with the illness in 2011, and one year later Emily set up the ‘Duchenne Children’s Trust’ after her son Eli was diagnosed. After meeting each other, the pair decided to combine their two charities and formed ‘Duchenne UK’ in 2016. The charity is dedicated to finding a cure to the disease by focussing on advancing global research. An expert Scientific Advisory Board, appointed by the pair, directs the millions of pounds that they have fundraised. The charity has directly funded three clinical trials and 13 research projects, co-funds 16 clinical trial staff, and spent £4 million on direct research grants.

In a personal letter to Emily, Prime Minister Theresa May said:

“Your tireless volunteer work is having a transformational effect on new research into Duchenne muscular dystrophy as well as increasing the public understanding of the rare condition. Despite the challenging personal circumstances of Eli’s diagnosis, your perseverance in establishing the ‘Duchenne Children’s Trust’ and co-founding ‘Duchenne UK’ is a testament to your shared commitment to finding a cure for the illness.”

In a personal letter to Alex, Prime Minister Theresa May said:

“Through your inspirational fundraising 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.”

Krishnan Guru-Murthy, Newsreader and Patron of Duchenne UK, said:

“Emily and Alex are truly extraordinary and inspirational mothers and leaders. They have transformed the landscape of Duchenne awareness and research in a short space of time while dealing with the extraordinary challenges of having boys with the disease themselves. They have brought hope to families around the world and motivated huge numbers of people who had never heard of the disease until recently to join their fight to end this most cruel genetic, fatal muscle waste disease.”

Alex and Emily 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. We are delighted that so many in the community in the UK are joining forces with us – because together, we WILL end Duchenne.”

 

See more on Duchenne UK

The daily Points of Light award recognises outstanding individual volunteers - people who are making a change in their community.

Volunteer now

Search winners