Debra J. Burgess, senior research assistant for the Duke Fragile X Project, was recognized with the Jack B. Hefner Memorial Award for her outstanding contributions in advocacy and leadership by the North Carolina Council on Developmental Disabilities (NCCDD) at its Advocacy and Leadership Awards reception on November 16 at the Hilton Garden Inn in Cary, NC.
From Mebane, NC, Burgess serves as the president of the North Carolina Fragile X Foundation and assists with the group’s fundraisers to support local and national efforts related to Fragile X.
When her son, John David, was diagnosed with Fragile X syndrome, Burgess began a path of advocacy that has led her to devote over 25 years to bringing awareness to Fragile X syndrome. She began as a volunteer, educating families and professionals about the disorder, which is the leading genetic cause of autism. Burgess trained through the Child Advocacy Commission and Exceptional Children Assistance Center.
“This council [NCCDD] has been instrumental in helping me advocate for our families who live and come to grips with Fragile X syndrome every day,” Burgess said. “I am overwhelmed and very surprised to receive this award, and I thank the council for this honor which reenergizes me.”
Burgess continues to meet and mentor families at the Duke Fragile X Clinic, where she is currently involved with clinical and research projects to advance studies of this genetic disorder.
“Our council is honored to recognize Deby and her work with the families and professionals who live with Fragile X syndrome,” said Chris Egan, executive director of NCCDD. “Her compassion and empathy are boundless, and her vision for a better understanding of Fragile X by all is to be commended.”
About the Jack B. Hefner Memorial Award
The award is named for Jack B. Hefner, who served the State of North Carolina as a member of NCCDD from 1982 until his death in 1994. As a father to a son with intellectual disabilities, “Big Jack” was “willing to do whatever it takes” to enhance quality of life for North Carolinians affected by disability. His leadership inspired a generation of advocates and people with intellectual and other developmental disabilities (I/DD) to work forcefully for full inclusion of everyone, regardless of ability.
About the North Carolina Council on Developmental Disabilities
The North Carolina Council on Developmental Disabilities (NCCDD) works to assure that people with intellectual and other developmental disabilities (I/DD) and their families participate in the design of and have access to needed community services, individualized supports and other forms of assistance that promote self-determination, independence, productivity and inclusion in all areas of community life. Through its Five-Year Plan, the council identifies and funds innovative projects and initiatives that promote the goals of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) for all North Carolinians.