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Tristan's Ultramarathon for STXBP1

Tristan Heywood is raising money for STXBP1 Foundation
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Thames Path Challenge 2022 · 10 September 2022 to 11 September 2022 ·

The STXBP1 Foundation is a parent driven foundation dedicated to raising awareness of STXBP1 Encephalopathy (a rare genetic disorder) among parents, physicians, scientists, and pharmaceutical innovators in order to better understand STXBP1 and thus develop better treatments and ultimately a cure.

Story

Thanks for taking the time to visit my JustGiving page.

Our precious baby boy Ardi was recently diagnosed with a genetic disorder called STXBP1, a very rare, incurable condition, affecting only 750 people (mainly children) globally. STXBP1 is horrible and severely restricts a child's development, causing a range of severe physical and cognitive challenges. 

So, I'm going to attempt to run/walk/crawl the Thames Path Challenge on Sept 10, which is a 100km shift along the River from Putney to Henley, to help raise awareness. 

Our aim is to raise money for the STXBP1 Foundation. This group represents a critical support network for families like ours, whilst also searching for a cure. 

All donations will be gratefully received and help us find a better future for Ardi and other children with genetic conditions like STXBP1. 

Donation summary

Total
£7,440.04
Online
£7,440.04
Offline
£0.00

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