International Schinzel-Giedion Syndrome Awareness Day 13 November 2020

By Emma Hudson, Secretary and Trustee of The Schinzel-Giedion Syndrome Foundation and mum to 2-year-old Jude who has SGS

Happy Birthday to Us!

13 November 2020 marked one year since the The Schinzel-Giedion Syndrome Foundation was registered as an official charitable organisation with the Charity Commission in the United Kingdom. Our Foundation was created to represent children living with SGS and their families all over the world. One of our missions is to raise awareness of SGS as a rare disease. This mission led us to establish the very first International SGS Awareness Day. What better way to celebrate our Foundation’s birthday?!

13 Days of Awareness

From November 1st, every day for 13 days in the run-up to our Awareness Day, we shared social media posts on Facebook, Instagram and Twitter featuring stories of children with SGS, important information about the condition and photographs of our SGS children and their families. The aim was for these posts to be shared far and wide so the world could learn about SGS and the way it affects our children’s quality of life. The international SGS community took the Awareness Day campaign to heart and shared our posts with not just family and friends but also medical professionals, researchers and other patient organisations.

Purple and Proud

We asked our families to share photographs of their children wearing purple to show their support for the SGS Awareness Day. There was a selection of heart-warming photos shared widely on Facebook and Instagram with the #sgsawarenessday and #schinzelgiedionsyndrome. The purple theme was strong throughout, with our children’s classmates and teachers wearing purple in support of SGS, as well as purple-themed painting and sensory play sessions and delicious purple SGS cakes!

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SGS Photobombs Explode!

A very special part of the SGS Awareness Day was the creation of the eye-catching digital photo frames which featured children from all over the world who are part of our international SGS community. The photo frames were designed to be posted and shared on Facebook and Instagram by our families. The highlight was a beautiful short film created from all of the framed photos, which can be viewed here. A special thank you to Franco Grech, graphic designer, who created these digital frames and film as part of the pro-bono work he does for the Foundation. They really made an enormous impact and helped to make our Awareness Day so memorable.

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Fundraising Success!

Another of our missions is 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 SGS. To do this we need to raise funds to support vital medical research.

A very important part of the SGS Awareness Day campaign was the fundraising that occurred within the SGS community. The call to arms was heard by our community and generous donations were received from across the globe.

This is a huge achievement for our very first fundraising campaign and we would like to thank everyone for their amazing generosity. We will soon share further information about the research projects that these funds will be supporting and the impact this research will have for our children.

Date for your diary: International SGS Awareness Day 2021 will be on Saturday 13 November 2021.