A Rare Mind – a Column by Terry Jo Bichell

Terry Jo worked as a documentary filmmaker, then became a public health nurse midwife after filming a difficult birth in West Africa. When her son, Lou, was diagnosed with Angelman syndrome at age 1, she switched to research, earning a PhD in neuroscience from Vanderbilt University in a quest to find treatments for Lou, who is now an adult. She directed the Angelman Biomarkers and Outcome Measures Alliance from 2016-2018 and now leads COMBINEDBrain, assisting other rare genetic neurodevelopmental disorders in clinical trial readiness. Her column opens the mind to people with Angelman syndrome and other similar disorders.