Clare Swain

Clare, Mike & Ernie's

Fundraising for The Schinzel-Giedion Syndrome Foundation
£1,000
raised of £500 target
Donations cannot currently be made to this page
We raise awareness and support research to improve the lives of children with SGS

Story



The Swains are honoured to be part of a team walking for a very special boy called Jude.

Jude was born in July 2018 with an ultra-rare life limiting neurodegenerative condition called SGS. This meant he had a host of health conditions and battled many problems daily, supported by his amazing family. He passed away in March 2022. 

Mike & I will be part of a team (including Emma and Steve, Jude’s parents) walking a distance of 21 miles from Scarborough Castle gates to the steps of Whitby Abbey. Ernie will join the walk at Robin Hood's Bay, along with some of his friends (including Jude’s big brother, Fraser), allowing us to complete the final 7 miles together. Other team members who cannot join on the day will be pledging to walk the equivalent distance over the course of July - making this July really all about Jude!

We are raising funds for the Schinzel-Giedion Syndrome Foundation - the charity founded with assistance from Jude's family. The SGS Foundation supports children and their families worldwide and aims to raise awareness of SGS as well as funds to support medical research into treatments. Please support our team as generously as you can.



About the charity

Our mission is to provide support to families caring for a child with Schinzel-Giedion Syndrome (SGS), to raise awareness of SGS and to facilitate and support vital medical research that will improve the quality and length of life of children living with this life-limiting, rare genetic condition.

Donation summary

Total raised
£1,000.00
+ £203.23 Gift Aid
Online donations
£1,000.00
Offline donations
£0.00

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