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.
We already have social security numbers, dates of birth, addresses, license plates, heights, weights, and ICD-10 codes. Isn’t that enough? No. It just plain isn’t enough for people with rare ... Read more
Welcome to Terry Jo Bichell’s “A Rare Mind,” a new Angelman Syndrome News column. About 75 people, mostly women, were in the room at the Washington Marriott Georgetown, listening attentively to ... Read more