Our lab’s Dr. Jessica Klusek and Dr. Lauren Jenner, joined Audra Sterling and Marcae Robertson for the National Fragile X Foundation’s webinar, FXS in Females: Current Research & What’s Ahead. The recording is now available to watch here: https://fragilex.org/resources/webinars/current-fxs-females-research-webinar/  

Dr. Klusek highlighted inequalities in our understanding of fragile X syndrome (FXS), with girls and women historically underrepresented in research. These gaps limit what we know about their experiences and support needs, which may go unrecognized even when difficulties have been present throughout their lives. 

Dr. Jenner shared how our research at the University of South Carolina is helping address these gaps. This work focuses on understanding what challenges can look like for girls and women with FXS, with attention also to mothers who have the full mutation themselves. Learning from these women and their families can help us better understand the range of experiences associated with FXS and guide more appropriate recognition and support for females. 

A key message from the discussion was that being affected differently does not necessarily mean being affected mildly. Research focused on girls and women is essential to understanding their strengths, challenges, and needs across their lives. 

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