7th September 2020

We’re #BackingJack on Duchenne Awareness Day

Today it’s World Duchenne Awareness Day so we catch up with Planning Manager Richard Binns who is fundraising for Duchenne UK.

We are supporting today’s World Duchenne Awareness Day. We talked to Richard Binns who has been busy fundraising for Duchenne UK with his #BackingJack campaign.

Last year, Richard’s son Jack was diagnosed with Duchenne Muscular Dystrophy (DMD), a condition which affects an estimated 300,000 people worldwide. The disease mainly affects boys, with sufferers typically left wheelchair bound by their teens and with a reduced life expectancy of between 20 to 30 years.

Richard was due to take part in this year’s 24 hour Duchenne Dash charity cycle from London to Paris with his brother-in-law Jonathon on June 12th & 13th. Sadly, the event, which raises funds for Duchenne UK, had to be cancelled because of the pandemic.

Undeterred, Richard carried on with his fundraising, taking to the country roads around his home in Cheshire to cover 300km during May. He also managed to complete a further 160km on the 13th June, the day he and Jonathon would have arrived in Paris!

With amazing support along the way and generosity from friends, family, colleagues and his local community, Richard has managed to raise over £12,000, that’s 76% of his fundraising target for this year!


Richard tells us how the money is already being used:

I’d like to thank everyone for their overwhelming support over the past few months. It really means to a lot to me, my family and of course, our very determined little boy, Jack. We’ve made our first contribution from our #BackingJack fund to fight against Duchenne. £3,000 of the money raised so far will go towards gene therapy research and clinical trials led by the University of Florida who will look to try to temporarily modify the immune system so that anybody can be treated with gene therapy, and, if necessary, can receive repeat doses.

To understand more about gene therapy and the related immunity challenges, please watch this short film:

So what’s next for Richard’s #BackingJack campaign?

With Covid-19 restrictions and event cancellations, Richard has called upon the support of his sister who makes silver jewellery. She’s completed a pendant design for bracelets that incorporates the Duchenne UK logo with all profits going to the #BackingJack campaign.

Richard has everything crossed he can actually take part in the Duchenne Dash next year in Paris and also has plans in place to organise a charity ball once the covid-19 restrictions are lifted. All profits will be used for further research into helping find a cure for the devastating muscle wasting disease affecting his five-year-old son Jack.

We hope you can show your support for Richard, Jack and the rest of the family here:





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