Newsletter Oct 2022

Fragile X Foundation Newsletter October 2022

Man and woman at a picnic laughing and having fun.

Celebrate Dr. Ave Lachiewicz and Deby Burgess at the NC Fragile X Foundation Picnic, Oct 15, 2022

Come join the Fragile X Friends & Family Picnic on Saturday, October 15, 2022, 11 AM to 3 PM, at Lake Mackintosh Park, 2704 Huffman Mill Rd. in Burlington. Reunite with old friends and enjoy a free lunch and desert from Chick-fil-A, games for the children, fishing* and paddle boating.*

You can still attend – so click on the button below and sign up today!

The program will begin at 1 PM in the clubhouse honoring the 30+ year careers of Dr. Ave Lachiewicz and Deby Burgess who retired from the Duke Fragile X Clinic this past summer.  Please join us for this celebration and a day of fun and fellowship!

*Fishing permits and boat rentals can be purchased at the park.

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Honoring Two
Fragile X Pioneers

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.

2023 to be a Special Year?

With COVID on the decline, the North Carolina Fragile X Foundation wants to make 2023 a very special year in which we all can work together to better serve our Fragile X community.  Here are some things the foundation is working on:

  • Community survey to determine what the NC Fragile X community needs and how the foundation might best meet those needs – look for this in mid-November.
  • A well-defined advocacy plan focusing on the needs of the community and specific political issues such as the expansion of Medicaid, introduction of the 1915i services, and additional Innovations waiver slots.
  • Education programs to help families understand and deal with the development and behaviors of children and young adults with Fragile X Syndrome and how to find services, benefits and resources for your family.
  • More recreation, lifestyle and socialization opportunities for our community.
  • A new public awareness campaign to engage our children and families and integrate the Foundation’s advocacy efforts while setting our activities and projects apart from other organizations.

What can you do?  Volunteers are needed to make all of this happen. You can serve on different committees working on newsletters and communications, advocacy efforts, organizing and promoting the upcoming special events like the picnic and bowl-a-thon and the education committee and its curricula. To volunteer or even join the board, contact the foundation’s president, Steve Strom, at

2023 will be a special year only with your help!