THIS year’s sixth edition of the Duchenne Dash endurance bike ride from London to Paris has raised £850,000 – with £76,000 coming from Chasing Connor’s Cure.
The Hildenborough charity was set up by Matthew and Emma Crawford after their son Connor, who is now six, was diagnosed with Duchenne muscular dystrophy [DMD] in 2016.
There is no cure. But this year’s ride featured a scientist who took up the challenge because after a quarter of a century of working on the disease he is optimistic about making a breakthrough.
DMD is the most common fatal genetic disease in childhood, affecting one in 3,500 – mostly boys. Around 2,500 suffer from it in the UK.
It causes a gradual deterioration of the muscles. The children lose the ability to walk in their mid-teens, and it becomes fatal when it reaches the heart and lungs.
The Duchenne Dash began in 2013 with the aim of raising enough funds to ensure that a cure would be found within 10 years.
The ride takes 24 hours and covers 315km. A total of 160 cyclists took part on June 8-9, with 15 riders representing Team Connor paying £400 to take part and agreeing to raise £4,000 each.
Mr Crawford was their ‘ride captain’, and the local contingent managed to raise a remarkable £30,000 more than last year.
One couple, David and Suzie Rae, the parents of Connor’s best friends, took part on a tandem.
They were joined by Joe Endersby, a teacher at Stocks Green Primary where Connor goes to school, as well as other parents.
‘It was an amazing weekend, an amazing experience,’ said Mr Crawford, who was taking part in his second Duchenne Dash.
‘It’s an emotional journey. The boys’ parents are all so passionate about finding a cure. It’s like an extended family’
He said Connor was in his thoughts throughout the 24 hours – and many other riders had children with DMD. ‘You have to dig deep and it’s an emotional journey,’ he said.
‘The boys’ parents are all so passionate about finding a cure. It’s like an extended family.
‘It’s been incredible this time. Last year we were exhausted, the diagnosis was still quite raw for us, family and friends.’
They left from Tonbridge Old Fire Station and travelled on the train to the official start at Twickenham Stoop, home of Harlequins rugby club.
The Old Fire Station is one of 27 local companies who have sponsored the charity, which has helped to boost their fundraising.
Another corporate partnership is with Tonbridge Brewery, who brewed a special beer for local pubs and contributed 50p from each pint sold to the charity. The Tonbridge Daily blog will also donate funds from the sale of its calendar.
Mr Crawford relates how the researcher who has spent 25 years working on finding a cure for Duchenne decided to part this year. ‘He told us it was the first time he has felt like raising funds because he feels that a breakthrough is imminent.’
Chasing Connor’s Cure works with Duchenne UK, who invest in projects that will accelerate treatments in order ‘to end Duchenne in ten’.
Mr Crawford said: ‘Duchenne UK provide the knowledge, research and expertise to allow us to make informed decisions on how the money will be spent. They give you a choice of specific projects to invest 100 per cent of what you raised.
‘Last year it went towards a breast cancer drug which they were looking at ‘repurposing’ after lab tests. This can lead to a quicker clinical application, which we are awaiting the results of.’
Meanwhile Connor is ‘in the best shape he could be’, says his father. ‘Connor deals with the medication and hospital visits really well.
‘He has a unique character, and he has a really good sense of humour, which helps him cope.’
To find out more and make a donation, visit www.chasingconnorscure.co.uk
PICTURE: TOWERING ACHIEVEMENT: Team Connor’s 15 riders reach the finish in Paris
