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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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Numerous small and parent-reported studies have shown that a considerable percentage of individuals with Fragile X syndrome also carry a diagnosis of autism spectrum disorder. Individuals with a dual diagnosis of Fragile X syndrome and autism were reported to show greater cognitive and behavioral impairment. The first large-scale study — using FORWARD data — revealed a high percentage of autism in the Fragile X syndrome population.
Findings also showed greater behavioral impairments as well as disparities between expected and observed behavioral treatment use, of those with a dual diagnosis when compared to those with Fragile X syndrome alone.
Love is in the air! Our very good friends, Tracy Stackhouse and Sarah Scharfenaker (co-founder emeritus) of Developmental FX , join us again to answer questions about Fragile X and behavior on our Valentine’s Day edition (and every day).
Hosted by Jayne Dixon Weber, Tracy Stackhouse and Sarah K. Scharfenaker (co-founder emeritus) of Developmental FX provide insight and valuable advice on autism and its relation to behavior in Fragile X syndrome.