Founded in 1993, as the North Carolina Foundation to Assist Families with Fragile X Syndrome and Related Disorders of Development.
The Foundation worked to connect families to services, to learn more about the Medicaid services available for families, and provide educational workshops.
In 1998, the NC Fragile X Foundation hosted the 6th International Fragile X in Asheville at the Grove Park Inn with over 1,000 people attending from across the world.
In 2019, the Foundation created a succession plan, clarified their mission, and set a course for the future.
Fragile X Syndrome (FXS)
Fragile X Syndrome (FXS) is a genetic disorder caused by a mutation (a change in the DNA structure) in the X chromosome.