Most past research on mothers of children with FXS has focused on those with the FMR1 premutation (55–200 CGG repeats). This new study is one of the first to focus specifically on mothers with the full mutation (200+ CGG repeats).

This project is funded by the Carolina Autism and Neurodevelopment (CAN) Research Center, with support from Dr. Lauren Jenner, a postdoctoral researcher (funded by the LivJoy Foundation) specializing in females with fragile X syndrome and full mutation carriers.

What does participation involve?
A single day of assessments, including:

  • Questionnaires and interviews about your experiences and thoughts
  • Assessments of thinking skills, movement, and social interactions
  • Heart activity monitoring to better understand physiological health
  • A one-time blood sample (finger prick) and cheek swab to study FMR1 gene variation

Compensation:
✅ $100 for participation
✅ Travel reimbursement or we can visit you in your home if preferred

Interested?
Email us at SCFamilyStudy@gmail.com to schedule a brief recruitment call and plan your assessment.

Your participation will fill a major gap in current research and help us better understand the experiences of mothers with the full mutation.

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