About Us

Three parents of children affected by Fragile X Syndrome (FXS) started Heartland Fragile X Alliance in 2012.  The purpose of the group is to support families affected by FXS in Iowa and South Dakota.  In 2018 the Heartland Fragile X Alliance became National Fragile X Foundation, Heartland Chapter – Iowa and South Dakota. As part of the National Fragile X Foundation’s Chapter system we continue to provide a space for families to connect, share information and support each other.  We also serve as a resource for professionals, doctors and teachers, who work with FXS individuals and families.  Through fundraisers and charitable donations, we have been able to provide financial resources for families to access Fragile X clinics, such as the University of Iowa Center for Disabilities and Development, help support the National Fragile X Foundation and provide funds for educational seminars and advocacy efforts.