Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. Prior to taking the position of Executive Director, she has owned and managed several small businesses in the private sector for over 25 years, with an emphasis on project management. This business experience has translated well into her role as Executive Director. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009.
While under her direction DSF has placed a focus on research, as well as patient community engagement and education. DSF has worked with multiple industry partners on several clinical trials since 2016, including some that are currently underway. These trials have resulted in three FDA-approved medications for the treatment of Dravet syndrome since 2018.
In addition to her role at DSF she serves on several epilepsy working groups and industry advisory panels. She currently resides in western North Carolina with her husband and the youngest of her three children, Elliot, who has Dravet syndrome.