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Hold Fast · 10 September 2023

Reverse RettVerified by JustGiving
RCN 1136809
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

Laura Berthinussen, Geraldine Mann, Marie Murphy and Karin Ivamy have come together to form Fox Force Four.

Our team is taking part in the Hold Fast Challenge to raise money for Reverse Rett.

The Hold Fast Challenge is a team building exercise based on the training clearance divers face in their gruelling fitness regime. It is designed to challenge physical and mental capabilities. However it's all about team work and having fun on the day.

We are raising money for Reverse Rett. Rett Syndrome is a rare condition that affects 1 in 10,000 girls born worldwide. Babies are born seemingly healthy, and develop normally until around their second birthday, when they start to lose their ability to talk, walk, and use their hands. Often there is a long road to diagnosis, involving 1-2 years of tests.

The child slowly loses their words and many are eventually unable to talk or walk developing epilepsy, breathing problems, heart issues, recurrent chest infections, and problems swallowing. They need 1:1 care, for life, and are at risk of aspiration, and life threatening pneumonia.

Reverse Rett is a small charity funding research into a potential gene therapy cure for Rett Syndrome. Much of the research has been taking place at the University of Edinburgh, and the first trials of the drug developed there are starting this year in the US.

12 year old Eliza lives in North Berwick with her parents and three siblings and has Rett Syndrome. Hopefully gene therapy will be available in the next few years and will give her a chance for a brighter future

Help Karin Ivamy

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Donation summary

Total
£640.00
+ £142.50 Gift Aid
Online
£640.00
Offline
£0.00

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