Once Upon a Gene Podcast

When Effie’s son, Ford, was born with an extremely rare genetic condition called CTNNB1 syndrome she dove headfirst into the world of advocacy. To help herself and others cope with and manage raising a child with a disability or rare genetic condition, Effie started the Once Upon a Gene podcast. In this podcast, she shares her personal stories and interviews other people impacted by rare conditions as well as, parents, advocates, doctors, scientists, and more.