Webinars & Videos

Created to air nationwide on PBS, this video explores the complexities of Fragile X, a family of genetic conditions that can affect learning, development, and behavior, and highlights the importance of early diagnosis and intervention. Through expert medical insight and personal family stories, this video shows how genetic testing, therapies, and community support can help individuals with Fragile X syndrome reach their full potential while offering hope for future treatments.

Thank you to Sydney Rainin-Smith for lending her voice to this project!

Explore caregiving across the lifespan in Fragile X. Hear from a panel of parent caregivers about shared experiences, practical insights, and support for families navigating the journey.

Explore clinical trial challenges, outcome measures, treatment development, and how researchers, clinicians, families, and advocates are working together to advance better treatments for Fragile X.

Through personal stories, this panel of speakers explores the boundless potential and opportunities of living with Fragile X. Learn how individuals and families have navigated challenges, discovered strengths, and forged inspiring pathways and connections.

This series of on-demand videos helps anyone seeking a clearer understanding of Fragile X syndrome and the Fragile X premutation.

Experts discuss the unique health, wellness, puberty, and fertility considerations for girls and women with Fragile X syndrome (FXS), including how needs can vary widely across individuals. Panelists discuss guidance on puberty conversations, reproductive healthcare, emotional wellness, sleep, exercise, and supporting independence.

An update on Shionogi’s EXPERIENCE clinical trial program in Fragile X syndrome, hosted by FRAXA and the National Fragile X Foundation. This webinar discusses the recently shared trial updates, what is known so far, and what comes next.

Experts discuss how anxiety manifests differently across developmental levels, its overlap with depression, and evidence-based treatments, including behavioral and medication approaches. Presenters share practical tools for managing anxiety in school, work, and social settings.

Guidelines with relevant resources for families with young children with FXS that are aligned with national early childhood special education and early intervention best practices.

Lauren Moskowitz covers how to assess the functions of challenging behavior (why the behavior is occurring) by first identifying the antecedents that “trigger” it and the consequences that follow it.