The mission of NCFXF is to improve the quality of life for those impacted by Fragile X through promoting awareness and understanding. This is accomplished by providing education, support, and advocacy.
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.
Steve Strom, newly elected President, has been part of the NC Fragile X Foundation board since 2017.
Deby Burgess and her husband Ray live in Mebane, NC. They have four adult children. Their 35-year-old son John David has fragile X.
After many years of experience in developmental disabilities and pediatrics, Dawn founded Pediatric Possibilities in 2005 in Raleigh.
Ave Lachiewicz, MD
Ave M. Lachiewicz, MD, is a board certified developmental-behavioral pediatrician and has worked at Duke University Medical Center for 34 years.
Kristin has been serving on the NC Fragile X Foundation board since 2019.
Renée Duffee Clark
Renée has worked in the field of developmental disabilities for 28 years and has been at the University of North Carolina at Chapel Hill since 1994.
Human Services Professional with 17+ years of experience.