Understanding
Okur-Chung Neurodevelopmental Syndrome
Once Upon A Gene Podcast
Once Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Host, Effie Parks shares her own personal story of raising a child with CTNNB1 syndrome, while trying to find the non-existent rule book of bringing up such a special kid. This podcast features interviews with fellow parents, therapists, doctors and anyone else who wants to share their story.
If you want to share your story please reach out at podcasts@ctnnb1.org
Once Upon a Gene is available on Apple Podcasts. Listen now.