Effie Parks is the host of the podcast Once Upon a Gene – it 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.
Effie was born in the magical land of Montana, where she was raised with her 12 loving siblings. After moving to Washington and marrying her husband, they were blessed with the birth of their son, Ford Canon Parks. A few months into her parenting journey she learned Ford had been born with an extremely rare genetic condition – CTNNB1 syndrome – soon after she dove into the world of advocacy and this eventually lead to her ultimately becoming a podcaster and speaker in the Rare Disease and Disabled community.