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patricia cunningham

Pat's 2014 Just Walk page

walking with the JeddiKnights for Reverse Rett because we want to reverse the effects of MECP2Duplication

210 %
£420.96
raised of £200 target
by 24 supporters
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Reverse Rett

We fund cutting edge research to reverse Rett Syndrome for good.

Charity Registration No. 1136809

Story

Thanks for taking the time to visit our JustGiving page.

On the 10th May a team of us will be walking 20K across the South Downs to help raise money for research into treatments for Rett Syndrome and MECP2 disorders.  Pat, Sarah, Lorna, Libby, Deb, Tom, Eddie and John are the JEDi Knights.

Our Nephew/cousin Jed suffers from MECP2 Duplication Syndrome. Its a genetic condition very closely related to Retts syndrome, affecting the same gene, and research into either will help both. 

He is now 5 years old and attends a special  school which he loves going to.  Jed has limited mobility but still manages to open any door in front of him, and can walk fast when he wants something despite having a bit of a wobble.  Although he can not speak he is able to let us know what he wants.  His ability to snatch a piece of toast without you seeing him is an amazing sight to behold.  He has loads of energy, especially at 5 o clock in the morning. He loves to tickle feet, laughs a lot and plays with Molly the dog.  He also loves his food.

There have been some recent breakthroughs in research which means that there is now a real chance of finding ways to reverse some of the devastating effects of this disorder.  It would be the most fantastic result if some of Jed's problems were minimised or reversed, or if children in the future were given a chance to be well.  Your money will help this research to continue so that the impossible becomes possible.

thank you very much.

 

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