About Us

History

The North Carolina Fragile X Foundation (NCFXF) began as the Fragile X Southeast Network in 1988. At that time there was little research and awareness about Fragile X Syndrome (FXS). Pam Brode and Ave Lachiewicz believed in the idea that parents and professionals were stronger working together and created a tax-exempt organization to promote an awareness of fragile X with the desire to help individuals maximize their potential. As awareness increased and more states created their own entities, the Southeast Network narrowed its focus to North Carolina. Around this time, the gene that is responsible for the Fragile X mutation was identified but not much else was known. When the new charter was created there was a belief that there may be many other disorders that would also be identified and similar to FXS. Therefore, the new organization became officially known as the North Carolina Fragile X Foundation to Assist Families with Fragile X Syndrome & Related Disorders of Development. The focus of the organization was to promote awareness, educate, and connect people caring for individuals impacted by Fragile X.

Throughout the years, our knowledge has increased about the impact that the fragile X gene has on the extended family as well as the community providers involved in their care. Our charge has been to evolve with the changing needs of families and professionals, and our organization officially became the North Carolina Fragile X Foundation. While the purpose of our organization has remained on awareness, education, and connecting families we are inclusive of the disorders that are a direct result of the fragile X gene and the far-reaching impact that it has on the extended members in families.