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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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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.
A discussion with Dr. Jeanine Coleman about the skills needed for college and how they’re linked directly to skills that begin in early childhood.
This session reviews features of attention problems, hyperactivity, and impulsivity in FXS and reviews previous studies of ADHD in Fragile X.
Barbara Haas-Givler and Cora Taylor discuss executive functioning in individuals with both the Fragile X full mutation and the premutation, including what executive function is and strategies to support individuals.
Dr. Heather Hipp, a reproductive endocrinologist at Emory University, discusses reproductive considerations for women with a Fragile X premutation, including FXPOI and the process for diagnosis.
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.
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.
These conference sessions explore the latest Fragile X syndrome research on maternal labeling and vocabulary, coping and well-being in FXS mothers, FMRP’s link to IQ, behavioral-cognitive subtypes, and innovative brain rhythm therapies using AI-driven sound stimulation to boost learning in children with FXS.
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.