Celyn's Duchenne Dash page

Team Armstrong is raising money for Duchenne UK
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The Duchenne Dash · 6 June 2014 to 7 June 2014 ·

As the leading Duchenne muscular dystrophy (DMD) charity in the UK, we want to find effective treatments for DMD and end its devastating impact. We’re going further than anyone has before, and we’re doing it faster, because this generation of people living with DMD can’t wait.

Story

Why did I agree to a gruelling ride from London to Paris in 24 hours, which will be painful, exhausting, and worst of all will involve the wearing of Lycra?

It's because of Eli. There's a picture of him below. He's the son of very close friends, and he was diagnosed shockingly and suddenly with Duchenne Muscular Dystrophy (DMD) at the age of three. I was devastated when I heard about it and can't begin to imagine what they have gone through. Eli is only a little younger than my son Freddie; when I see them playing together it's heartbreaking to think about what's ahead of him. 

As of now DMD is 100% fatal with no cure. Children with the disease cannot produce dystrophin, a protein necessary for muscle survival and as a result, every skeletal muscle in the body deteriorates. 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. Every penny raised by The Duchenne Children’s Trust 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! 

If you'd like to know more see the video in the Gallery below, or visit the website: www.duchennedash.com


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Donation summary

Total
£3,030.00
+ £677.50 Gift Aid
Online
£2,930.00
Offline
£100.00

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