I'm taking part in one of the world's grittiest bikeraces (more below) to help save the life of Eli and the thousands of boys like him with Duchenne Muscular Dystrophy (DMD). The Duchenne Children’s Trust was set up by Emily and Nick Crossley, after their son, Eli was shockingly and very suddenly diagnosed with Duchenne Muscular Dystrophy, which is the most common fatal genetic disorder to affect boys. They cannot produce dystrophin, a protein necessary for muscle survival and as a result, every skeletal muscle in the body deteriorates. At the moment DMD is 100% fatal with no cure; most children die in their early 20’s from heart or respiratory failure and every child ends up in a wheelchair by the age of 12-14.

HOWEVER scientists believe they are on the edge of finding a substantial treatment and possible cure for the disease to make these facts no longer true. As a result every penny of the money being raised is being spent RIGHT NOW on research. The Duchenne Children’s Trust is funding 8 projects in the UK and another in Holland – all of which show real promise. And they've met with politicians, scientists, regulators, and pharmaceutical companies – to push the case for quicker access to drugs.

This disease moves fast and we don’t have time as a luxury. I'm joining the fight to raise funds to speed up the research and clinical trials so we can get a drug that will stop this devastating disease NOW. The race is on to finish this cycle race, so we can win the most important race, to End Duchenne in Ten. We’ve got 9 years left.  With hope, courage, determination and your help, we will make this happen!

The bikerace in question is called 'La Marmotte' and it is said to be the hardest amateur bike race in existence.  The course involves cycling 174 km 'long' and 5,100 metres 'up' through the Alps in one day.  There are four mountains to climb over the day.  The first two are large; the second two are the (I now know) 'infamous' Galibier and Alpe d'Huez, and they are said to be two of the hardest climbs on the Tour de France.  I will be delighted to if I can just finish the event, since this is my first (and almost certainly my last) bike race.