Tom Burns
Tom and Terry Burns took part in the Duchenne Dash to help end this fatal disease
Fundraising for Duchenne UK
Story
We are cycling the Duchenne Dash, a gruelling 24 hour bike ride, from London to Paris to help save the life of Eli and all those with Duchenne Muscular Dystrophy. We will be riding with newsreaders and executives from Channel 4, ITN, ITV and Sky News as well as representatives from Santander, Google and Twitter.
Last year Terry managed 120 of the 190 mile journey in 24 hours (albeit with following wind) and is training to do more this year (the year of his 70th birthday). Tom's role is not to look after his father but to ensure one member of the Burns family completes the journey.
We need your support.
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 (the disease mainly affects 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 cycle from London to Paris in a time frame of 24 hours, 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!