Raring to Go - Cure DHDDS Thames Path Walk · 8 June 2025 ·

Cure DHDDS is founded by parents of children diagnosed with a DHDDS gene mutation. We are not scientists or medical professionals but parents trying to find the best way of helping our children. Our mission is to support families diagnosed with DHDDS gene mutations, help drive research into these little-known mutations, and help find treatments so that those affected by variants in the DHDDS gene can lead the best life possible. Our vision is a world where there is a cure for everyone with a DHDDS variant.

Story

On June 8th, Tabitha is walking 20 km from Waterloo to Mortlake, and Polly is walking 7 km from Putney to Mortlake, to raise money and awareness for a rare condition called DHDDS.

Two years ago it was discovered that Polly's friend Rosie, and Rosie's older brother Tom both have a rare change in the DHDDS gene. This causes a metabolic disorder that affects the brain and nervous system. It leads to symptoms like tremors, muscle twitches, learning and balance problems, and seizures.

When they were diagnosed, their family learned that this condition is extremely rare, only about 80 people in the world are known to have it, and there was almost no research or treatment available.

Since then, Rosie and Tom's mum and dad with the help of friends and family have started a charity called Cure DHDDS to help find a treatment for Rosie, Tom and others like them, so they can all have a better future.

We're doing this walk to raise money for that research. Please sponsor us if you can.

Donation summary

Total
£147.11
+ £32.50 Gift Aid
Online
£147.11
Offline
£0.00

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