NFXF Belonging Project

A sense of belonging within your community is crucial for mental and emotional well-being. When individuals feel connected to the people around them, they are more likely to experience higher levels of happiness, self-worth, and security.

Belonging fosters a supportive environment where people can share experiences, seek help, and contribute to a collective sense of purpose. It strengthens social bonds, reduces feelings of isolation, and provides a sense of stability and comfort. In addition, being part of a community promotes personal growth by encouraging collaboration, empathy, and understanding. Overall, the sense of belonging enriches lives and helps individuals thrive both personally and collectively.

But the question remains: how do we make sure that everyone in our special Fragile X community feels like they belong to the community, especially those in underrepresented and underserved groups?

One of our newest initiatives aims to intentionally extend our reach to underserved communities across the United States. In partnership with four Fragile X clinics, we’ve begun work to understand the challenges to diagnosis and treatment faced by Black, Hispanic and Native American communities and the providers who serve them, and we’re proud to say we’re already having a major impact!

In early 2024, the NFXF – in partnership with the Fly With Me fund – awarded three clinics with funding for their projects dedicated to reaching underrepresented and underserved communities. Additionally, the NFXF developed a survey project on belongingness.

Meet the Belonging Project awardees and learn more about the crucial work they’re doing:

Leveraging Community Engagement to Advance Access to Diagnosis and Treatment in FXS
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Principal Investigator:  Debra Reisinger, PhD, Cincinnati Children’s Hospital Medical Center

Project Description:

Fragile X syndrome (FXS) does not discriminate across race, ethnicity, geographic region, or socioeconomic status (SES).  However, our current understanding of FXS is largely based on research with Non-Hispanic, White participants, consistent with the patient demographics seen in FXS clinics across the United States.

There are several significant barriers that limit individuals from racially and ethnically diverse backgrounds from regularly participating in clinic visits and research.  This is particularly problematic since researchers do not know how pharmacological and behavioral interventions are meeting the needs of culturally and linguistically diverse FXS populations, especially given that interventions are often assumed to be effective for all even though they have been developed and validated primarily with and for Non-Hispanic, White individuals.

Underrepresenting individuals from historically marginalized racial and ethnic groups contributes to systemic inequities in FXS diagnoses, treatment access, and outcomes.  To address these barriers, our project focuses on increasing knowledge and awareness of FXS through community engagement and outreach opportunities at community health clinics and events in local diverse communities

Our central goal is to provide targeted education on early identification of FXS and obtaining genetic testing with a focus on health clinics in underserved areas across Cincinnati and the Tri-State area including free/charitable clinics, Federally Qualified Health Centers, and other community health centers with high Medicaid utilization rates.  Further, we aim to expand to the rural free/charitable health care clinics surrounding Cincinnati, and at least one free/charitable health clinic in Indiana and Kentucky.  Within this goal, this project will assist in the development of training and dissemination materials providers can use in their clinic to assist in understanding the diagnosis and treatment of FXS, as well as connecting families with the Cincinnati FXS Center.

University of Utah and Primary Children’s Hospital Fragile X Clinic Belonging Grant 

Principal Investigator:  Victoria Wilkins, MD, MPH, University of Utah and Primary Children’s Hospital

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Project Description: 

It is important to establish a sense of belonging and social connectedness for rural families living with FXS.  This sense of connection can come from both affiliation with a larger FX clinical hub and with local support.  We propose to build Fragile X Community capacity by connecting with health care providers, families, and building remote outreach and networking capacity and opportunities for families.  We will survey families on their sense of connectedness using the National Survey of Health and Disability (NSHD) as well as the UCLA Loneliness Scale.  We will work to better understand barriers and facilitators to accessing specialized FX care for families in rural settings and provide support to local care providers for their patients with FXS. 

Further, our region contains a large amount of Native American tribal land. 2.7% of the population of the State of Utah is Native American. ​ Native Americans living in Utah report unmet needs for healthcare, problems with transportation, and culturally insensitive care.​​ We have contacted Indian Health Services (IHS) physicians to better understand what their needs are with respect to FXS. Currently, they have not identified any individuals with FXS in their clinical portfolio. Our FXS clinic has identified two patients with Native American heritage in our own clinic population. Because there are likely more unidentified Native American patients with FXS in our catchment area, we will focus our Native American outreach to help health care providers recognize the signs and symptoms of FXS and to obtain the correct testing for FXS. We will do virtual outreach with the regional Native American healthcare network to raise awareness of the condition and how to test for it. They will also be able to then refer their patients to clinic. 

Project Updates:

• “Since we started this project funded by the NFXF Belonging Grant this summer, we have identified two new individuals with a diagnosis of FXS in the Pacific Islander and Native American communities.  Also, we have identified that one of their siblings is a carrier and the other’s sibling is likely full mutation but still untested.  One of these children is a teenager who had never been tested for genetic causes of autism prior to Belonging Grant outreach.  Even if these 4 children are the only new patients we find through the Belonging Grant, it has made a huge, meaningful life-changing difference for 2 families.” – Victoria Wilkins, MD, Medical Director at the University of Utah Fragile X Clinic

“Belonging” – Empowering Families Affected by Fragile X Syndrome

Principal Investigator:  Naterra Walker, NP, Children’s National Hospital

Project Description:

The “Belonging” project aims to create a supportive and inclusive community for families affected by Fragile X Syndrome (FXS) in the Washington, DC region.  This project will focus on providing educational workshops, parenting classes, multilingual resources, community engagement and support groups in the DC Metro area, to enhance the quality of life for individuals with FXS and their families.  The project’s success will be measured by increased knowledge, improved caregiving skills, clinic growth and strengthened social connections within the targeted communities.

Our “Belonging” project is designed to make a positive impact on the lives of families affected by FXS and living in the DC metro area.  By fostering a sense of belonging, providing education, and building a supportive community, the project aims to empower families to navigate the challenges associated with FXS and enhance their overall well-being.

Belonging in Fragile X:  A Survey Addressing Diversity, Equity, and Inclusion in the Fragile X Community

Principal Investigator:  Hilary Rosselot, National Fragile X Foundation