Raleigh, NC (December 1, 2016) – Debra J. Burgess was recognized 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 Nov. 16 at the Hilton Garden Inn in Cary, NC.

Burgess, senior research assistant at Duke University for the Fragile X Project, was awarded the coveted Jack B. Hefner Memorial Award which celebrates the vision and achievement of advocacy by North Carolina's families and people with intellectual and other developmental disabilities (I/DD).

From Mebane, NC, she serves as the president of the North Carolina Fragile X Foundation. She assists with the group’s fundraisers to support the chapter and national efforts related to Fragile X. Since her son, John David, was diagnosed with Fragile X syndrome, Burgess began a path of advocacy that has led this mother of four to devote over 25 years to bringing awareness to Fragile X syndrome. She began volunteering to educate families and professionals about this leading genetic cause of autism. A passionate advocate, Burgess trained through the Child Advocacy Commission and Exceptional Children Assistance Center.

“This Council has been instrumental in helping me to advocate for our families who live and come to grips with Fragile X syndrome every day. I am overwhelmed and very surprised to receive this award and I thank the Council for this honor which reenergizes me,” said Burgess.

Burgess still meets and mentors families at the Duke University Fragile X Clinic, where she is currently involved with clinical and research projects to advance study in the Fragile X field.

Chris Egan, executive director of NCCDD, said, “Our Council is honored to recognize Deby and her work with the families and professionals on their journey with those who live with Fragile X syndrome. Her compassion and empathy knows no bounds 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.

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