Sheena McGee started the Gould Syndrome Foundation, on the floor of her living room just 11 months after her daughter, Zeeva's 14th operation. She knew there was a distinct need for medical and scientific collaboration for community she was a part of through her daughter's COL4A1 diagnosis. In addition to homeschooling Zeeva and running the Foundation, Sheena runs an Interior Design firm with a focus in residential accessibility.
Sheena serves as the Vice Chair's Board of Directors at MAHO (Maximum Accessible Housing of Ohio). She also Chairs their Anderson Center Committee and the Strategic Planning Task Force.
She received her BA in Interior and Environmental Design from Syracuse University and minored in Fine Arts History with a Concentration in Architecture. She received her Board Certification in Patient Advocacy in 2019 with the desire to help share all she has learned navigating the complex medical rare disease life. Sheena resides in Cleveland, Ohio with her husband Jason, 8 year old daughter Zeeva and their pup, Sir Dublin.