The NFXF Blog
Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives
Most individuals with FXS cannot state themselves that they are anxious and self-report is needed in current standardized assessments. The information analyzed in this study will result in the development of a measure where observable and quantifiable data on anxiety in those with FXS can become an outcome measure to be used in future research/trials.
Study: Autonomic and Sensory Functioning in Infants with FMR1 Conditions
Dr. Jane Roberts and the research staff at the Neurodevelopmental Disorders Laboratory at USC are conducting a research study to learn about the development of infants with Fragile X syndrome and Fragile X premutation over the first few years of life.
Increasing Access to Services for Families of Infants with Fragile X — Webinar Replay
Hear an overview of how the Early Check team integrates telehealth models to provide families with the necessary information, support, surveillance, and intervention.
“Wat Up?” and Other Steps to Socialization
“Hey” was one of my son Ian’s first words, and what he quickly learned was that whomever he said that to responded — with something. Usually it was with a smile and friendly tone to their voice, and you know how quickly our children pick up on that positive feeling.
Toilet Training Across the Lifespan — Webinar Replay
Jennifer Epstein provides an overview of methods that support the practice of readiness skills, and helps caregivers understand the common hurdles affecting skill attainment specific to Fragile X syndrome.
Zynerba Shares their RECONNECT trial
Zynerba presented about their prior results and their current RECONNECT during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
Healx Shares their IMPACT-FXS trial
Healx Ltd presented about the IMPACT-FXS trial during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
Asuragen Shares Their Molecular Testing Capabilities for Fragile X
Asuragen presented about the progress of Fragile X molecular testing during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
Tetra Therapeutics Shares their BPN14770 trials
Tetra Therapeutics presented about their prior results and current BPN14770 trials during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
Survey: Research Experiences in Fragile X Families
The Brain and Biomarker Lab at the University of Oklahoma is conducting a survey to learn about experiences with research, particularly biomedical research, in families with Fragile X syndrome (FXS).
Study: Language Study for Children and Adolescents with Fragile X syndrome
Researchers at the University of Wisconsin-Madison and the University of Massachusetts-Amherst are conducting a study to learn about links between learning and language in Fragile X syndrome.
American Academy of Pediatrics Hosts New Course on Fragile X syndrome
AAP/CDC course, "Identification, Management, and Caring for Children and Adolescents with Fragile X Syndrome" will be available for pediatricians and other healthcare professionals through August 1, 2025, on the AAP PediaLink platform.