Amy Van Bergen

Former Executive Director, Down Syndrome Association of Central Florida

Amy Van Bergen has been a nonprofit leader since 1991 and served as executive director of the Down Syndrome Association of Central Florida until her retirement from fulltime work in 2016. Prior to that she was an award-winning newspaper and magazine editor. In 2010, she helped found Down Syndrome Affiliates in Action, the first trade association for parent-support groups and she also served on advisory groups for both the National Down Syndrome Congress and National Down Syndrome Society. From 2017-2019m she consulted with Global Down Syndrome Foundation on the Medical Care Guidelines for Adults with Down Syndrome project.

Amy is the mother of five adult children, including her son Wils who has Down syndrome, as well as Mamey to six grandchildren. ​In addition to her nonprofit consultant work, Amy was named the NDSS Stephen Beck Jr. Advocate of the Year in 2016 and recently received the 2021 Lifetime Award of Distinction from Down Syndrome Affiliates in Action.