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The NFXF and LivJoy Foundation have partnered to present the Females with Fragile X syndrome webinar series. Join NFXF Executive Director Hilary Rosselot, LivJoy Foundation President Rachel Clouse, and LivJoy Foundation Fellow Dr. Lauren Jenner.
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Whether this is your first NFXF International Fragile X Conference or you are a seasoned conference attendee looking for a refresher, these foundational videos are for you.
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.
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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.