You may have noticed that the SC Family Study Lab was recently featured in a National Fragile X Foundation (NFXF) article highlighting one of our committed research participants, Laurie.

In “Meet Laurie, a mother of two, who also lives with the Fragile X premutation”, Laurie shares her experience of the growing clinical recognition of Fragile X–associated tremor/ataxia syndrome (FXTAS) – a neurodegenerative condition that can impact both men and women with the premutation.

The article also highlights national efforts to advance the understanding of Fragile X–associated conditions, including FXTAS, and notes expanding collaboration with the National Ataxia Foundation, with the NFXF’s national clinic listings now highlight NAF Ataxia Centers of Excellence as part of the FXTAS clinic network: https://fragilex.org/resources/clinics/?_clinic_condition=fxtas#find-a-clinic-near-you

We’re grateful to Laurie and the NFXF for sharing the lived experiences that drive our research. Monitoring FXTAS progression – particularly among women, whose experiences remain understudied – is a key focus of our NIH P50 Fragile X Center of Excellence here at the University of South Carolina.

Read the full feature on the NFXF website: https://fragilex.org/nfxf-programs/2025-annual-appeal-meet-laurie/#utm_campaign=PANTHEON_STRIPPED&utm_campaign=Weekly%20Newsletter&utm_medium=email&utm_content=392993050&utm_source=hs_email

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