We want to hear from you! Make your voice heard and take our 10-minute survey today!
We are inviting you to help us tackle a complex topic by providing us with your invaluable input. Your thoughts and experiences will help us inform how we can break down existing barriers, so that every member of our community feels like they truly belong.
We know there are no racial or ethnic bounds to Fragile X. But right now, the families going to FXCRC clinics and interacting with the NFXF are not representative of the entirety of the Fragile X community.
We know we are not reaching the entire Fragile X community, and we want to identify and understand what barriers exist so we can actively break them down. To have a true sense of community, everyone must feel like they belong.
A sense of belonging is important to feeling like part of a community. Belongingness is the human emotional need to be an accepted member of a group. Whether it is family, friends, co-workers, a religion, or something else, some people tend to have an “inherent” desire to belong and be an important part of something greater than themselves.
Belonging is when each member of the community is treated and feels like a full member of that community. Belonging is the foundation to diversity, equity, and inclusion.
This is important work, and we believe it is an issue across the Fragile X community that we can solve together. The NFXF is committed to addressing the gaps in belonging in the Fragile X community and we are interested in understanding your experiences so we can take actionable steps toward ensuring that all members of our community feel like they belong.
What to Expect
This survey will ask you questions about:
- Who you are
- Diversity in Fragile X community and research
- Your perspectives on “belonging”
- How we — the NFXF — can do better
Questions?
You can reach out to Kristin Bogart, Director of Development, at kristin@fragilex.org.
about
Anna De Sonia
Anna joined the NFXF team in 2024 as Director of Research Facilitation. She has many years of research experience, starting as a clinical research coordinator at Rush University Medical Center in Chicago in 2010. There she worked on a variety of clinical trials in the pediatric neurology division, specializing in Fragile X research. Anna earned her bachelor’s in psychology and is a certified clinical research coordinator (CCRC®) through the ACRP (Association of Clinical Research Professionals). She loves spending time with her dog, traveling and exploring new cultures, listening to music, and enjoying time with friends and family.