Mary Anne is a founding member and the Executive Director of the Dravet Syndrome Foundation (DSF). She is a passionate advocate for the Dravet syndrome and rare epilepsy communities. Since her son’s diagnosis in 2004, she has actively participated in numerous working groups and industry advisory panels. Under her leadership, DSF has prioritized research, along with fostering patient community engagement and education. Currently, she resides in western North Carolina with her husband and the youngest of her three children, Elliot, who has Dravet syndrome.