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Edgar's page

Edgar Leibovici is raising money for The Duchenne Research Fund
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Prudential RideLondon-Surrey 100 2018 · 29 July 2018 ·

We fund research into potential treatments and cures for Duchenne muscular dystrophy, a devastating genetic muscle-wasting disease that leads to paralysis, heart and lung failure and early death for all sufferers. We get involved to make a difference for all Duchenne sufferers. Help us find a cure.

Story

I am doing this challenge for a charity called The Duchenne
Research Fund which is a charity close to my heart. 

It is a charity set up by my friends Kerry and Doron Rosenfeld over 10 years ago when their son Gavriel was diagnosed with Duchenne Muscular Dystrophy.

Duchenne muscular dystrophy (DMD) is a progressive and fatal
muscle-wasting disease that almost exclusively affects boys. It is caused by a lack of dystrophin, a protein that is needed to hold muscles together. Without dystrophin, all skeletal muscles begin to deteriorate, leading to paralysis, heart and lung failure, and early death – on average in the sufferer’s mid-twenties.

Duchenne is 100% fatal. There is currently no cure.

Lack of dystrophin is the result of an error in the
dystrophin gene, which is found on the X chromosome. As boys only have a single X chromosome, this error causes them to have Duchenne muscular dystrophy. Girls can be carriers of the genetic error, and in 1% of cases they can be sufferers.

The genetic error can be inherited from a female carrier. However, in a third of cases it is caused by a completely spontaneous genetic mutation – and therefore can happen to anyone.

For more information, go to www.duchenne.org.uk 

Thank you for your support. Every penny will make a difference.


Donation summary

Total
£9,154.00
+ £484.50 Gift Aid
Online
£5,714.00
Offline
£3,440.00

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