Sarah Hepworth-Hurst

Sarah's page

Fundraising for Cure DHDDS
£6,220
raised of £350 target
Donations cannot currently be made to this page
Event: Windsor to Mortlake 50km walk, on 9 July 2023
Cure DHDDS

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RCN 1202643
We raise funds for DHDDS to further research into the gene mutation

Story


On July 9th I will be walking 50 km from Windsor to Mortlake with a group of friends to raise funding and awareness of DHDDS mutations.

Last year friends, Mel and Charlie, found out that two of their three children, aged 13 and 8, have a DHDDS gene mutation which causes a metabolic disorder. Children with these mutations suffer with neurological symptoms such as tremors, myoclonus, learning difficulties, ataxia and seizures. Unfortunately for many with the genetic mutation it seems to be progressive with worsening conditions as they get older.

They have been told that as the genetic mutations are so rare (only 70 cases have been recorded in the world so far), and because they have only recently been discovered, there is currently no treatment available for them.

The initial aim is to raise £500,000 to help fund research and expedite treatments. Longer term we hope to look at RNA therapies, which we hope can one day cure this disorder.

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About the charity

Cure DHDDS

Verified by JustGiving

RCN 1202643
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.

Donation summary

Total raised
£6,220.00
+ £282.50 Gift Aid
Online donations
£6,220.00
Offline donations
£0.00

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