Veteran rugby stars are on their way to Paris in an eight-day cycle ride, to raise up to £250,000 for the Duchenne Children’s Trust.
Spurring them on is organiser Alasdair Robertson, whose son Felix was diagnosed with the incurable, muscle-wasting disease Duchenne muscular dystrophy in 2014.
And among the core team of ten for the Duchenne Dash Max is Stephen Crossley, who created the Sportsmanship First life skills programme, based at Birdham Fruit Fruit Farm, Martins Lane, Birdham.
Stephen explained why he got involved: “Felix, three, has this disease. My daughter, Charlotte, nine, was born without a thyroid and once said ‘Daddy, will I die?’. Luckily for Charlotte, there is medication but not for Felix, therefore I can only imagine the moment when Felix is comforted by his mummy and daddy when he is told his fate and it makes me want to cry.”
Duchenne affects one in 3,600 boys, resulting in muscle degeneration and death by the age of 25.
Stephen added: “Some fantastic donations have funded successful medical trials, which may mean that Felix’s mummy and daddy can cuddle him tight one day soon and say something that will make them all smile brightly.
“To make that day happen, a cavalry of steel on carbon has been called upon to charge from Scotland to Paris in eight days and trumpet the cause in towns and cities en route.”
Ex-England captain Will Carling, Scotland international rugby greats Rob Wainwright and Roger Baird, and British Olympic rower Greg Searle are among the former sports stars taking part in the ride, joining the core team at various stages en route.
The cyclists set off from John O’Groats on Friday and should make London tomorrow. They will then continue via Dieppe to Paris for the finish on Saturday.
Stephen said: “I am asking people to make a pledge and support this hard cavalry of middle-aged men in lycra as I really want to see this little boy and others like him have a life.”
Alasdair said, like all boys with DMD, Felix is deteriorating quickly.
“Whilst progress is being made with the development of treatments, it can’t happen fast enough, which is why we need to raise money to accelerate progress,” he added.
The trust is a charity founded by Emily and Nick Crossley in 2011 after their son Eli was diagnosed with DMD. They have raised more than £3.5million and spend more than 90 per cent of all the money they receive on research and clinical trials.
Duchenne muscular dystrophy (DMD) is an incurable, muscle-wasting disease that kills more children than any other genetic condition.
There is accelerating deterioration from birth, resulting in a significant decrease in quality of life by age seven to eight, wheelchair dependency by early teens, total dependency by late teens and a lingering death in the mid-20s from lung failure and heart disease.
Money raised on the Duchenne Dash Max will be used to fund life-changing research into the use of a combination of existing drugs, approved for use in other diseases that share one or more pathological characteristics of DMD, to treat Duchenne.
The rationale is that these drugs have proven efficacy and safety, meaning the development process is much quicker and relatively inexpensive, with the drugs typically being off-patent and, therefore, low cost.
Dash organiser Alasdair Robertson said: “The hope is that the outcome will see effective treatments in 12 to 24 months rather than ten or more years, which would be too late for Felix, let alone the tens of thousands of older boys with the disease.”
For Felix was set up by Alasdair and his partner Robyn Pete after their son Felix was diagnosed with Duchenne in 2015. Felix reached all of the normal milestones – walking at one and talked at two – but was constantly falling as a toddler. A specialist diagnosed him with hypermobility and, almost as an after thought, it seemed, looked at Felix’s calf muscles.
Robyn said: “It makes me feel really uncomfortable even now, thinking back. That he knew then what was in store for us, even before he did the CK test, which suddenly became urgent, he knew it was Duchenne muscular dystrophy.”
They have since thrown themselves into fundraising and learning about research. Alasdair is the lay adviser on Duchenne UK’s Scientific Advisory Board and chairman of its Patient Advisory Board.
Yesterday, the dash team stopped at Alderhay Children’s Hospital to meet patients and clinicians. They were hosted by Dr Stephan Spinty, head of pediatric neuromuscular medicine, and joined by stars of rugby league and soccer to attract publicity. Today, they will go to Oxford University to meet patients and scientists, hosted by Prof Dame Kay Davies, honorary director.
They team has also had support from astronaut Tim Peake who sent a Facebook message to them from space.
To make a donation, visit uk.virginmoneygiving.com/team/forfelix or to follow the progress of the dash, find For Felix – Duchenne Dash Max on Facebook.
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