Helen's page

Helen Riley is raising money for Reverse Rett
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Just Walk 2013 · 11 May 2013 ·

Reverse Rett is a patient advocacy and research organisation focused on delivering treatment for Rett Syndrome to all affected. Read more here: reverserett.org.uk For Rett Registry UK: https://www.rettregistry.uk/

Story

Amy is five and looks perfect - but actually every aspect of her life is affected by something called Rett Syndrome. She can't walk, talk or direct her hands. She has epilepsy, a feeding tube in her stomach and a curved spine which means that she has to wear a rigid spinal brace all the time. She receives round-the-clock care from her loving family, who are my friends.

Rett Syndrome is caused by a single defective gene which wrecks havoc on the bodies of girls like Amy. (You can read more about Amy here: http://livingwithrettsyndrome.blogspot.co.uk )

But there is hope. Researchers have successfully reversed Rett syndrome in the lab - and scientists believe that Rett could be the first reversible neurological disorder. Funds are needed for further research and clinical trials. 

So I've signed up for a sponsored 60 kilometre walk in May over the South Downs. I really enjoy walking - but still, 60km is a long way!

The Rett Syndrome Research Trust UK is a small but very impressive charity, working tirelessly and effectively on behalf of girls like Amy.

Thank you for sponsoring me.

 

 

Donation summary

Total
£710.73
+ £147.50 Gift Aid
Online
£710.73
Offline
£0.00

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