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Louise Crow Arnold avatar
Louise Crow Arnold

Louise's Great South Run 2014 page

To raise money for Duchenne breakthrough research for Muscular Dystrophy UK because Leon has Duchenne Muscular Dystrophy

123 %
£1,230.00
raised of £1,000 target
by 39 supporters
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  • Event: Bupa Great South Run 2014, 26 Oct 2014

Muscular Dystrophy UK

We fund research into muscle-wasting to improve the lives of everyone affected.

Charity Registration No. 205395 (England and Wales) - SC039445 (Scotland)

Story

In January this year we received the devastating news that Leon, our now 4 year old has Duchenne Muscular Dystrophy. 


Duchenne is a serious condition which causes progressive muscle weakness, generally by the age of 8 boys are struggling to walk and a wheelchair is required Between 10 and 14. It is life shortening - most boys with this condition only live into their 20's and suffer from heart or respiratory failure.

Medical advancements are moving at speed (but not fast enough) and we believe that in the future the devastating effects of Duchenne will be reduced with new drugs and treatments. Several such drugs are currently on the horizon and undergoing medical trials. The current use of steroids is helping boys with Duchenne, but have serious side effects, more targeted and sophisticated treatments are being developed. Leon is young enough and has a short window of time and opportunity for these new drugs and treatments to be licensed and used to help him and other boys before they get too old and damage takes hold.

Photos

3
  • Because I'm Happy
  • Leon at the Aquatic Centre

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