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Hold Fast Beach Challenge Reverse Rett · 10 September 2023

Reverse Rett

Verified by JustGiving

RCN 1136809
We 're working to bring treatments for Rett Syndrome home

Story

Kate, Scott, Catherine & Ross

2 sets of parents who are now friends through the love and hope for our beautiful daughters Kim & Eliza to help rid them of this awful rare neurological condition called Rett Syndrome. All four of us have taken part in some crazy challenges over the last few years to help support Reverse Rett and as we near potential transformational gene therapy trials we are once again taking on another challenge together as one team.

Hold Fast Reverse Rett Beach challenge which involves running, finning, swimming, and carrying oppo's, and logs, in teams, on Yellowcraigs beach in East Lothian. This day is based on experiencing the training clearance divers face in their gruelling fitness regime, designed to challenge, physical and mental capabilities. However it's all about team work and positivity on the day.

Rett syndrome is a rare condition that affects1 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.they slowly lose their words and many are eventually unable to talk or walk, and develop 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.

Please help us once again as we don wetsuits and flippers to complete this max challenge for our gorgeous girls xxx

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About the charity

Reverse Rett

Verified 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/

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