“As a mother of a child with SGS, The Schinzel-Giedion Syndrome Foundation and SGS community provide our family with a huge amount of support. We can share information on symptoms and treatments with people who really understand SGS and the devastating impact it can have.

Through the Foundation we feel there is hope that our child’s condition will be better understood by the medical community and more effective treatments for symptoms such as epilepsy and kidney problems will be identified.”