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Terry Monkaba

Executive Director

Terry and her husband Gary attended their first Williams Syndrome Association event (WSAs second ever convention) when their son Ben was just six months old. At the time, the average age for diagnosis of Williams syndrome was eight years, so they were a bit of a rarity bringing such a young child – especially one who had been diagnosed at just six weeks having already undergone two extensive cardiac procedures. They became “hooked” on the WSA that weekend, and Terry began volunteering for the Association when Ben was four years old and has been working with them ever since. As a regional volunteer, she helped families connect locally, then she served as a board member and officer, and became executive director in 1997. During the journey, she received her MBA with an emphasis in marketing. In another life, Terry was a professional photographer and “I thought I had the world by the tail; but thinking back on it now, life before Ben (and the WSA) pales in comparison.” She notes that her circle of friends now reaches around the globe and she loves every minute she spends working with individuals with WS and their families. Son Ben, a musician, has also embraced WSA, and younger brother Adam is an architect. In her rare spare time, she still loves photography and videography, and is happy to play golf whenever she can.