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Ben's 100km Ultra for Reverse Rett

The Finn and Ben Team is raising money for Reverse Rett

Team: The Reverse Rett Lakers 25

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Lake District Ultra Challenge 2025 · 7 June 2025 to 8 June 2025 ·

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

I shall never forget May 3rd, 2009. I woke up, stretched and yawned in bed, and at that precise moment had a stroke at the ripe old age of 31. A cerebellar infarct to be precise. I spent two weeks in hospital, couldn’t see properly for a week, and couldn’t walk in a straight line for months. I taught myself to walk again and in 2024 completed a 100km Ultra in the Lake District. At one point after the stroke, walking 10m along a hospital corridor felt almost impossible, so the feeling of completing an Ultra in 2024 was incredible.

This year, 2025, I’m doing it all over again. You might be wondering why on earth I’m putting myself through this after my medical hiatus. The reason is that our daughter, Lottie, has a genetic condition called Rett Syndrome. Rett Syndrome is a horrible condition that causes profound disability. However, two gene therapy clinical trials are already underway and I am determined to move mountains (or at least walk up them) to support Reverse Rett in their quest to accelerate disease-modifying treatments for Rett Syndrome. These treatments have potential to transform the lives of children living with Rett Syndrome, including Lottie.

Thank you for visiting my page and for any support you can give. Anything is possible.

Donation summary

Total
£8,567.00
+ £1,763.59 Gift Aid
Online
£8,567.00
Offline
£0.00

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