Mary Anne was a founding member of the Dravet Syndrome Foundation (DSF) in 2009 and has served as the Executive Director since 2012. Before shifting her focus towards advocacy, she owned and managed several businesses in the private sector for over 25 years, with an emphasis on project management. Her professional background, combined with her personal experience as a parent of a child with Dravet syndrome, equips her to lead the organization and connect families, clinicians, researchers, and industry effectively.
Under her leadership, DSF has prioritized research, patient community engagement, and education. These initiatives have led to significant achievements, including the development of international consensus clinical care guidelines, the establishment of ICD-10 codes, and foundation-led publications addressing unmet needs, relevant outcomes, and caregiver treatment preferences. Through her stewardship, DSF has established itself as the largest nongovernmental funder of Dravet syndrome-specific research globally. Since 2016, DSF has collaborated with various industry partners on multiple clinical trials, some of which are still ongoing. These efforts have led to the FDA approval of three medications for treating Dravet syndrome since 2018.
Mary Anne is a passionate advocate for the Dravet syndrome and rare epilepsy communities and has served on various epilepsy working groups and industry advisory panels since her son was diagnosed in 2004. She currently resides in western North Carolina with her husband and the youngest of her three children, Elliot, who has Dravet syndrome.
