NFXF Belonging Project: Site Updates 2025

Clinic: Children’s National Hospital

Principal Investigator: Naterra Walker, NP

Project Update: The team at Children’s National has made significant progress in building awareness and community connection around Fragile X since the start of the year. Highlights include a successful presentation at their institution’s Research Week, where their research assistant showcased the impact of their Education Day and ongoing family support group. The presentation sparked interest in a potential publication, which is now in progress.
The clinic has also worked to strengthen its relationships with community pediatricians, many of whom were previously unaware of the FXS clinic at the institution. At the Future of Pediatrics conference, staff shared educational materials on appropriate genetic testing for developmental delays and autism, leading to new family referrals. Several of these families were people living with the premutation, sparking a renewed focus on addressing the long-term questions and needs of this group. With a newly hired genetic counselor now in place, the team is better equipped to support these families moving forward.

Their family support group, run by the clinic’s social worker, wrapped up this summer and provided valuable feedback. While attendance was sometimes low, survey results revealed that many families were more interested in community resources and support than in formal education sessions. The team plans to shift future events to reflect this preference, balancing information-sharing with more personal, practical support.
Looking ahead, the team is preparing to host its annual community race again, complete with Fragile X-themed hats for participating families. They’re also aiming to continue hosting Fragile X events on a less frequent basis to avoid overwhelming families’ schedules, while still keeping them informed about research, policy updates, and local resources.

Clinic: University of Utah and Primary Children’s Hospital

Principal Investigator: Victoria Wilkins, MD, MPH

Project Update: The University of Utah team has continues to build strong momentum in their outreach and engagement efforts, with a special focus on Native communities in Utah and the Four Corners region. One highlight includes their upcoming participation in the Sacred Circle Health Resource Fair on July 25th—an event that previously led to direct referrals and new patient connections. This ongoing relationship with Sacred Circle underscores the value of culturally-rooted, community-based outreach.
In addition to in-person events, the team has been hosting a series of webinars this summer. These webinars are aimed at engaging families and caregivers. A recent session on self-care for people who live with the premutation sparked meaningful conversation, with strong feedback from attendees about future topics. In response, the team is planning a webinar on puberty and behavior, building on past work and collaborating with the NFXF and other expert partners to create polished, widely shareable resources. Another upcoming webinar will focus on behavior management, driven by community interest and team expertise.

Throughout this project, the team is actively collecting data to better understand community needs and impact. These insights will help shape future programming well into the fall of this year. Despite some logistical hurdles, the Utah team remains committed to creating inclusive, supportive spaces where families feel seen, heard, and connected.

Pictured, top to bottom: Dr. Vicki Williams, Fragile X Clinic Director; Britt Gowalty-Weinstock, Fragile X Clinic Coordinator; Raven Sevilleja, Research Assistant

Clinic: Cincinnati Children’s Hospital Medical Center

Principal Investigator: Debra Reisinger, PhD

Project Update: Since the beginning of their project in 2024, the CCHMC researchers have continued to expand outreach efforts, despite a slowdown in training sessions earlier this year. Based on feedback from the 2024 NFXF Conference, the team has shifted focus to broader community connections. This includes partnering with statewide organizations like OhioRISE, a Medicaid care management program, to distribute training materials and brochures to care managers and providers across the state. The goal: ensure more families affected by Fragile X are aware of and connected to available support.

Efforts to build long-term sustainability are also underway. The team is preparing for their annual local family conference and participating in back-to-school events this summer. Encouragingly, they have been written into a new center grant that will allow them to continue DEI-related work after the Belonging grant funding ends.

One of the most impactful outcomes so far has been the direct connection with providers. Many have begun reaching out with cases and feel more comfortable with genetic testing—especially regarding Fragile X permutations, a topic many were previously unfamiliar with. The team continues to prioritize being a go-to resource for providers and families across the state.

Location: National Fragile X Foundation

Principal Investigator: Hilary Rosselot

Project Update: Earlier this year, we — the NFXF — launched our survey on belongingness and what it means to members of the Fragile X community to belong. After survey collection is completed, at the end of Summer 2025, the NFXF and researchers in Miami will host focus groups for English and Spanish-speaking individuals who want to have more in-depth conversations on what it feels to belong to the Fragile X community.

If you haven’t taken the survey yet, we’d love to hear from you! You can take it (or share it!) in English or in Spanish.

If you have questions about anything research-related, we’d love to hear from you! You can reach out to Anna De Sonia at anna@fragilex.org.