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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.
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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.
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Dr. David Hessl joined the NFXF to discuss the exciting new ACT for FXTAS study, funded by the National Institute of Neurological Disorders and Stroke (NINDS).
Descubre qué es la premutación del síndrome del cromosoma X frágil en tan solo 90 segundos. Este breve video animado de la Fundación Nacional del Síndrome del Cromosoma X Frágil explica cómo la premutación del cromosoma X frágil afecta a las personas y a las familias, y por qué es importante concienciar sobre este tema.
Learn what the Fragile X premutation is in just 90 seconds. This short animated video from the National Fragile X Foundation explains how the Fragile X premutation affects individuals and families — and why awareness matters.
Explore cutting-edge Fragile X premutation research uncovering how RAN translation and CGG repeat RNA toxicity drive FXTAS neurodegeneration, and how the epigenetic regulator Tet2 influences ovarian dysfunction in premutation carriers — highlighting new mechanisms and therapeutic targets. With Kate Shelly and Samantha Grudzien.
Join Dr. Peter Todd as he shares the collective hope and anticipation surrounding the promising future of treatments for Fragile X-associated conditions. In this keynote session at the 19th NFXF International Fragile X Conference, Dr. Todd discusses the history, challenges, and advancements that have helped shape the trajectory of treatments for Fragile X-associated conditions.
Genetic counselor Susan Howell explains how to help self-advocates and siblings understand genetic results, associated reproductive implications, and the landscape of reproductive options. This session aims to help self-advocates and siblings understand genetic results, associated reproductive implications, and the landscape of reproductive options.
These conference sessions explore new insights into Fragile X premutation carriers, including cognitive profiles in school-age children, healthcare experiences of women with FXPOI, one-year progression of FXTAS, and tremor characteristics in FXTAS vs. non-FXTAS premutation carriers.
Dr. Deby Barbouth explores evidence-based lifestyle choices, mind-body techniques, and more to enhance well-being. This holistic approach aims to empower individuals living with the Fragile X premutation for a transformative journey toward lasting well-being and self-care.
Two FXTAS videos from two Fragile X experts. Dr. Peter Todd gives an overview of the causes and symptoms of FXTAS, the typical diagnostic journey for those affected, and what to expect for clinical care. Dr. David Hessl gives an overview of the current state of research and drug development related to FXTAS.
Dr. Hessl discusses the details of a longitudinal study that examined executive functioning changes in men living with the FMR1 premutation. He describes how the study was conducted, what the results showed, why they are important, what they mean for the FX community, and the next steps to move us forward.