Leon's 100km Lake District Ultra Challenge for Reverse Rett

Leon Roberts is raising money for Reverse Rett

Team: Reverse Rett Lakers

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Lake District Ultra Challenge 2024 · 8 June 2024 ·

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

My motivation for this crazy challenge is best said in the words of Ben, Lottie's dad. The urgent need for support could not be clearer. Please support the team if you can. Ben said;

'Lottie Lashbrooke is 13. She is the sweetest, funniest, most beautiful girl imaginable and she is the heartbeat of our family. What is truly amazing is that she manages all of this with only very limited ability to speak, operate her body, or do the other things girls can do. We know she has the potential to shine even brighter and give so much more to the world like every other girl and woman with Rett Syndrome.

Things are getting exciting with the first UK gene therapy clinical trial for Rett Syndrome already approved. This was unimaginable when Lottie was diagnosed ten years ago and Reverse Rett have played an incredible part in funding research that led to this point. Now, Reverse Rett will be pivotal in working with the pharmaceutical companies running the trial whilst continuing to fund the CIPP Rett Centre at King's College Hospital, which is dedicated to finding Rett syndrome patients in the UK to ensure that treatment becomes accessible to all.

With treatment for Rett Syndrome closer than ever before, something we could only dream of when Lottie was younger, there has never been a more vital time to raise money for Reverse Rett. That’s why I’ll be putting on my walking boots on 8th June 2024 to do the Lake District Ultra Challenge comprising a 100km non-stop walk (without sleep 🥴) including 2500m elevation. Any donation you can make would be hugely appreciated.' ❤️

Donation summary

Total
£2,352.50
+ £566.88 Gift Aid
Online
£2,352.50
Offline
£0.00

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