Duchenne’s is a cruel disease – that’s why I’m cycling to Paris

At 3pm on Friday 10 members of the Channel 4 News team, from the editor to the graphic designers, will be joining me on an epic 300km cycle ride to the Eiffel Tower in Paris. Our task is to get there in 24 hours.

I’m doing this for a simple reason. I’ve got a bouncing seven-year-old boy at home and I dream about his future. My friend Emily Reuben, who founded the Duchenne Children’s Trust, has a bouncing seven year-old boy whose muscles are gradually deteriorating (pictured below). Eli has Duchenne muscular dystrophy – a desperately cruel disease which currently leads to paralysis and death in all cases.

But we can do something about it. Rare diseases like this don’t get the funding they need to research treatment because there isn’t going to be a billion-pound dividend at the end for a drug company.

But the scientists working on the disease are hopeful that a major breakthrough is within reach. So it is up to patient groups like Duchenne Children’s Trust to fund the gap. Once they prove it works the industry will step in. Right now this is the biggest genetic killer of teenagers and young men in Britain.

Most London-Paris rides take three days, and people doing it find it pretty tough. The Duchenne Dash does it in one go. It is scary but exciting, especially for an overweight couch-potato like me. But take a look at this video and you will quickly see why.

To find out more and how to donate go to our website – www.duchennedash.com – or find us on www.justgiving.com/duchennedash.

We’ll be sending pictures and video along the way so follow us on twitter @krishgm or here on the C4 News website.

Follow @krishgm on Twitter