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Her son was born with an extremely rare genetic condition called CTNNB1 syndrome. This rare disease is caused by a deletion, partial deletion, or mutation of the CTNNB1 gene. It is a neurological condition that can cause a range of symptoms from mild developmental delays to severe physical and intellectual disabilities. To help herself and others cope with and manage to raise a child with a rare genetic condition, Effie started the Once Upon a Gene podcast to be the home base for exploring the world of raising these special kiddos. She shares her personal stories and interviews other parents, patients, advocates, doctors, scientists, and more.