On Fri 7th June we will be taking part in the Duchenne Dash, a 24hr bike
ride from London to Paris, in order to raise much-needed funds for Duchenne UK (https://www.duchenneuk.org/).
Whilst I appreciate that we all receive a lot of requests for charitable
giving, we would very much appreciate any support you could give to this extremely worthwhile cause which has great personal significance to us both.
In December 2012 Felix, the now seven-year-old son of great mate Ali Robertson, was diagnosed with Duchenne Muscular Dystrophy, an incurable and fatal 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 7 to 8, wheelchair dependency by early
teens, total dependency by late teens and a lingering death in mid-twenties from lung failure and heart disease.
Whilst it’s a particularly horrible disease, the reality is not as hopeless as it sounds. Real progress is being made in the development of new treatments that have the potential to alter and hopefully even cure Duchenne. And in the shorter term, ongoing research is identifying a combination of repurposed drugs approved for the treatment of other diseases that are showing real promise in slowing and perhaps even halting the progress of the disease.
Whether it’s novel or repurposed drugs, their development costs a lot of money, which is why we are cycling from London to Paris on 7th June, covering 300 km’s in 24 hours, with the aim being to raise as much money as possible to further vital research and get a combination or repurposed drugs in to trial and patients as quickly as possible.
All the money raised will go to Duchenne UK to fund research and medical trials.
There really is no time to waste if we’re going to save Felix and this generation of Duchenne boys so please give as generously as you possibly can.
Thank you all very much.