Exploring Parents’ Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome
Given the limited data regarding future planning specific to individuals with Fragile X Syndrome (FXS) and the growing population of this community, this study sought to explore the concerns and challenges caregivers of individuals affected by FXS encounter when considering long-term support plans.
Long-Term Follow-Up of Telehealth-Enabled Behavioral Treatment for Challenging Behaviors in Boys with Fragile X Syndrome
This study showed the significant impact that behavioral treatments can have on rates of challenging behaviors commonly exhibited by boys with FXS, particularly when parents are coached to implement the intervention with their child via telehealth.
Parent and Caregiver Perspectives towards Cannabidiol as a Treatment for Fragile X Syndrome
Some caregivers and parents of individuals with FXS have given CBD supplements to the individuals they care for and learning about their insights and experiences is important. This was the first study to learn more about their observations and opinions regarding CBD to treat FXS.
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.