Clare Swain


Fundraising for The Schinzel-Giedion Syndrome Foundation
raised of £300 target
We raise awareness and support research to improve the lives of children with SGS


Mike, myself, Scarlett and Ernie are taking part in a fundraising event called “July for Jude”  to raise fund for The Schinzel Giedion Syndrome Foundation.

When Emma approached me this morning to ask if we would like to join in with “July For Jude” I didn’t need to think twice. They are such an amazing, caring, beautiful family who we are lucky to call our friends. 

I have put our target at £300 pounds as Jude will be 3 years old in July. Please read their story and if you can support us in our challenge and donate  please do 💙.

Jude was born with an ultra rare life-limiting neurodegenerative condition called Schinzel Giedion Syndrome (SGS). He is one of only 50 children in the whole world with this condition. His condition means that he cannot walk, talk or eat as a normal child would. He has daily seizures and is fed via a feeding tube. He battles many problems daily in order to live a comfortable life. When we received Jude’s diagnosis he was just 3 months old. We spent hours searching the web for families to contact who had a child with the same condition as Jude. We felt alone and isolated until we finally found other families to share our experiences and medical knowledge with and to receive support from a group who truly understand what it is like to care for a child with SGS.In 2019, the SGS Foundation was established as a UK based charity by several parents of children with SGS, including Emma who acts as Secretary. The mission is to provide support for families caring for a child with SGS, to raise awareness of SGS and to facilitate and support medical research that will help us find better treatments to improve the quality and length of life of children living with this devastating rare genetic disorder.In July 2021, Jude will turn 3. This is a huge milestone because children with SGS are not expected to live beyond infancy. To celebrate, we encourage as many people as possible to complete the “July For Jude” challenge to run/cycle/skip/jump/swim 1 mile every day in July. It’s not about the distance. It’s about the unrelenting commitment to doing something difficult every single day - which reflects the huge responsibility a parent must undertake when caring for a seriously disabled child with SGS. All money donated will be used by the SGS Foundation to support children with SGS and their families by ensuring they are connected and have the knowledge and information they need to make empowered decisions about their child’s care.

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
+ £96.25 Gift Aid
Online donations
Offline donations

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