William Orr

William's The Duchenne Dash page

Fundraising for Duchenne UK
£3,205
raised
by 59 supporters
Donations cannot currently be made to this page
Duchenne UK

Verified by JustGiving

RCN 1147094
We have one clear aim: to End Duchenne

Story

 

Thanks for taking the time to visit my JustGiving page.

 

I'm cycling to Paris in 24 hours 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 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!

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

About the charity

Duchenne UK

Verified by JustGiving

RCN 1147094
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.

Donation summary

Total raised
£3,205.00
+ £801.25 Gift Aid
Online donations
£3,205.00
Offline donations
£0.00

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