About Us

Mission Statement

The mission of NCFXF is to improve the quality of life for those impacted by Fragile X through promoting awareness and understanding. This is accomplished by providing education, support, and advocacy.

Members of the NC Fragile X Foundation watching an educational presentation.


The North Carolina Fragile X Foundation (NCFXF) began as the Fragile X Southeast Network in 1988. At that time there was little research and awareness about Fragile X Syndrome (FXS). Pam Brode and Ave Lachiewicz believed in the idea that parents and professionals were stronger working together and created a tax-exempt organization to promote an awareness of fragile X with the desire to help individuals maximize their potential. As awareness increased and more states created their own entities, the Southeast Network narrowed its focus to North Carolina. Around this time, the gene that is responsible for the Fragile X mutation was identified but not much else was known. When the new charter was created there was a belief that there may be many other disorders that would also be identified and similar to FXS. Therefore, the new organization became officially known as the North Carolina Fragile X Foundation to Assist Families with Fragile X Syndrome & Related Disorders of Development. The focus of the organization was to promote awareness, educate, and connect people caring for individuals impacted by Fragile X.

Throughout the years, our knowledge has increased about the impact that the fragile X gene has on the extended family as well as the community providers involved in their care. Our charge has been to evolve with the changing needs of families and professionals, and our organization officially became the North Carolina Fragile X Foundation. While the purpose of our organization has remained on awareness, education, and connecting families we are inclusive of the disorders that are a direct result of the fragile X gene and the far-reaching impact that it has on the extended members in families.

NC Fragile X Foundation board member Kristin Burgess posing for a group photo with two gentlemen with Fragile X.

Board Members

President Steve Strom

Steve Strom


Steve Strom has been part of the NC Fragile X Foundation board since 2017. He and his wife, Teresa, are parents to an adult son with Fragile X Syndrome.

Read more about Steve Strom

Diane Upshaw

Diane Upshaw


Diane is a Budget Analyst for the State of NC in the Office of State Budget and Management.

Read more about Diane Upshaw

Portrait of Renee Clark

Renée Duffee Clark

Renée has worked in the field of developmental disabilities for 28 years and has been at the University of North Carolina at Chapel Hill since 1994.

Read more about Renée Duffee Clark

Portrait of Kristin Burgess

Ave Lachiewicz, MD

Ave M. Lachiewicz, MD, is a board certified developmental-behavioral pediatrician and has worked at Duke University Medical Center for 34 years.

Read more about Ave Lachiewicz, MD

Juan Pablo Molliendo

Juan Pablo Molliendo

Juan is the parent of young teenage daughter diagnosed with FXS at the age of 5, is Spanish speaking and connected with the national FX community.

Read more about Juan Pablo Molliendo

Allison Taylor

Allison Taylor

Allison is a Physician’s Assistant at Duke in psychiatry, child and adult mental health and pain meds. Allison has been a long-time Civitan member and leader in the local, state and international chapters.

Read more about Allison Taylor

Foundation Board Meetings

Anyone interested is welcome to attend NC Fragile X Foundation board meetings in the calendar of events below either in person or via zoom. At the start of each meeting, the board opens the floor for public comments, so please be prompt and limit your comments to the designated public comment time.

The Zoom link for quarterly board meetings is:


Meeting ID: 930 3021 8861
Passcode: 914028

Location of Board Meetings is: 921 Morreene Rd, Durham, NC 27705

Upcoming Board Meetings will be held:

  • June 8, 2024, 9:00 AM
  • September 14, 2024, 9:00 AM
  • December 7, 2024, 9:00 AM