Causepods

In this episode, we are talking with Effie Parks, creator and host of Once Upon A Gene. As a parent of a child with special needs, Effie’s cause is to help other families navigate their new realities by sharing stories, creating a community of support.After months of doctor’s visits and tests, Effie shares the emotional road to her son’s rare genetic syndrome diagnosis, CTNNB1. Effie goes into detail about what CTNNB1 is, what the symptoms are and how it can be different in each case.As Effie tried to navigate her new reality, she found herself feeling isolated, scared, and not able to relate to friends with children who didn’t have the same challenges. After searching for some guidance in her journey, Effie found podcasts that became a lifeline, helping her to realize she was not alone. It was then that Effie knew she wanted to help create more of this content in the form of a podcast to help others know that they are not alone.As our conversation goes on, Effie describes the impact she’s seen sinc