Sara was first introduced to DDX3X when her daughter, Olive, was diagnosed in late 2017 right before her 3rd birthday. Since then, Sara has been working to help the medical and scientific community advance their understanding of the syndrome. As a member of the DDX3Xx Foundation Leadership Advisory Board, her primary focus is around the Foundation’s efforts regarding scientific research, helping to strengthen and improve outreach and engagement with leading medical centers and connecting with leaders and pioneers in the pharmaceutical industry focusing on cutting-edge gene therapies. Sara Is an interior designer in New York where she lives with her husband and two kids. She has worked on projects all over the world and specializes in designing children’s rooms, where her work has been published in a book entitled Kid Chic.