Welcome to the NC Fragile X Foundation.

If you are new to the Fragile X community, we welcome you! Whether you have Fragile X, love someone impacted by Fragile X, work with someone who has Fragile X, or just want to learn more—we are here to help! Learn how you can be involved!

We are a group of committed volunteers and family members supporting individuals impacted by Fragile X syndrome. 

People sitting on floor in a circle stretching out resistance bands over their heads.

Founded in 1993, as the North Carolina Foundation to Assist Families with Fragile X Syndrome and Related Disorders of Development.

The Foundation worked to connect families to services, to learn more about the Medicaid services available for families, and provide educational workshops.

In 1998, the NC Fragile X Foundation hosted the 6th International Fragile X in Asheville at the Grove Park Inn with over 1,000 people attending from across the world.

In 2019, the Foundation created a succession plan, clarified their mission, and set a course for the future.

NC Fragile X Picnic October 15!

The NCFXF’s annual picnic will be held on Saturday, October 15, 11 AM to 3 PM, at the Lake Mackintosh Park where we will commemorate the outstanding careers of Ave M. Lachiewicz, MD and Deby Burgess, two of North Carolina’s Fragile X pioneers.

NC Fragile X Bowl-a-thon

Each year, the NCFXF proudly hosts the highly acclaimed bowl-a-thon in Clayton, NC.

NC Fragile X Picnic

The NCFXF hosts an annual picnic and walk-a-thon to celebrate and grow the Fragile X community.

About Fragile X


Fragile X Syndrome (FXS)

Fragile X Syndrome (FXS) is a genetic disorder caused by a mutation (a change in the DNA structure) in the X chromosome.


Your generosity will help us achieve our mission of improving the lives of those impacted by Fragile X Syndrome.