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Tom's 20mile challenging coastal run for Timothy Syndrome Alliance

Tom Walpole is raising money for Timothy Syndrome Alliance (TSA)
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Tom's 20mile run for Timothy Syndrome Alliance (TSA) · 5 August 2023

Over 250 families. 41 countries. One ultra-rare genetic condition with no approved treatments and no cure. We exist because they needed us to — and we're building the roadmap to change that.

Story

I've found my running legs and I'm gonna do some good at the same time as challenging myself, big time!

I've entered the Vaga RAT 20mile challenge that, on 5th August, will take me through stunning coastal scenery, over undulating paths, through fields, villages and surrounding South Cornwall countryside.

I've chosen to support the locally based ultra-rare disease charity Timothy Syndrome Alliance to help them with their mission of improving diagnosis, treatment and care. They support families and individuals with a disease caused by a gene change that has both cardiac and neurodevelopmental symptoms like Autism, ADHD, epilepsy, and developmental delay. There is no cure.

When I say it's ultra-rare I mean super super rare. There are at the moment around 120 individuals, mainly kids, with this gene change globally. This tiny charity needs your support for the best chance of improving knowledge and having a real influence on research to find answers.

Donating means I'll actually have to do it :o)

Donation summary

Total
£1,158.58
+ £252.50 Gift Aid
Online
£1,158.58
Offline
£0.00

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