NFXF Blog

How do researchers know whether a new treatment meaningfully improves life for people living with FXS? A recent study found that a commonly used behavioral measure in FXS clinical trials captures many of the challenges caregivers say matter most, including behaviors like social avoidance, irritability, and hyperactivity. These findings can help researchers choose meaningful ways to measure whether treatments are making a difference in everyday life.

Carme Torrents, MD, a 2026 Jr. Investigators Awardee, summarizes an important symposium by Drs. Elizabeth Smith, Tatyana Adayev, and Anne Wheeler, during the 20th International Fragile X Conference.

Tetsuya Asano, a 2026 Jr. Investigators Awardee, summarizes an important talk by Jessica Klusek during the 20th International Fragile X Conference.

A new study from the CDC and NFXF examines geographic access to Fragile X specialty care and identifies gaps in access to FXCRC clinics across the U.S.

Survey results reveal strong interest in gene therapy for Fragile X syndrome, highlighting family perspectives, hopes, concerns, and future research needs.

New research uncovers how gene expression, protein regulation, and synaptic pathways are altered in Fragile X syndrome and FXTAS, offering deeper insight into disease biology.

Children with Fragile X syndrome struggle more to process and recognize word patterns in speech. Scans show their auditory brain regions — specifically the primary auditory cortex — don’t sync with speech sounds as strongly as other children do.

This research looks at social participation in children with Fragile X syndrome, including key barriers, gender differences, and practical ways families, schools, and communities can support inclusion and engagement.

This research looks at how a child’s level of intellectual disability (ID) — meaning how much their thinking and learning abilities are affected — relates to the types of behavioral challenges they experience if they have Fragile X syndrome (FXS).