Newsletter Oct 2022

Ave M. Lachiewicz, MD and Deby Burgess, two North Carolina’s Fragile X pioneers, retired from the Duke Fragile X Clinic this summer after outstanding careers serving over 500 families impacted by Fragile X Syndrome across the state.

The adventure began as Ave’s interest in Fragile X emerged from her clinical work while Deby Burgess was drawn to it when seeking help with her infant son.  In the mid 80s, Deby’s son, John David, was tested for Fragile X through a program funded by a March of Dimes grant which then led Deby to her first Fragile X conference even before her son had been positively diagnosed.

“When we walked into the respite care room and I thought, ‘I don’t care what that test comes back as, my son has Fragile X and these women are going to be able to help him,” Deby explained.  She soon joined the staff at Duke’s Fragile X Clinic where she met Ave Lachiewicz, and remembers she went into her office, sat down and told her, “I’m not going anywhere,” and went on to say she would stay as long as Ave did - not realizing she would stay till she was 70.

The two of them just naturally teamed up and set out to educate healthcare professionals, teachers, lay people, parents and extended family members about the nature of Fragile X.  In the late 80s, much of Ave’s and Deby’s earliest work was funded by grants from the March of Dimes and the North Carolina Council on Developmental Disabilities in what evolved into 36 years of dedicated teamwork.

“We just started meeting the parents and that’s how we got more and more involved with the community,” Ave said, “Some of the parents were really struggling to get services for their kids, so that really led to workshops and this whole big adventure.”

Ave’s clinical and professional success is notable.  After joining Duke in 1986, she quickly became focused on Fragile X Syndrome and became a prolific clinical researcher - authoring or co-authoring 31 published peer reviewed papers, three book chapters,18 abstracts, two booklets and two general publications articles to help increase awareness and understanding of Fragile X among professional and lay people.

Her clinical research and service to the NC Fragile X Foundation earned her numerous honors including the Jerrett Cole Award for Excellence in Clinical Care of Children with Fragile X (1990) and the Al and Melissa Blount Lifetime Achievement Award (2016) - both from The National Fragile X Foundation.

Over Deby Burgess’ career, she has been known in North Carolina’s Fragile X community for the emotional support and comfort she has given to so many families on both a professional and volunteer basis.  She is past president of NC Fragile X Foundation and has served for many years on the Foundation’s board.  In 2016, she was awarded the coveted Jack B. Hefner Memorial Award for her contributions in advocacy and leadership to the Fragile X and developmental disabilities communities by the North Carolina Council on Developmental Disabilities.

“Their retirement marks the end of an era for me and our community,” Deby’s daughter, Kristin Burgess said after watching them work together for many years.  “Advocating for Fragile X is the only thing I’ve ever known growing up, I’ve never seen anything like this - I’ve never seen two people so dedicated, so passionate about helping families.”

To carry on their work, Dr. Alice Bryn Salter, a developmental pediatrician, is joining Duke and Dr. Gail Spiridigliozzi, the clinic’s adolescent psychologist, will remain on staff for several years to assure a smooth transition for the clinic’s patients.