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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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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.
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.
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.
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.
The multidisciplinary panel discussed the unique experiences and support needs of females living with Fragile X syndrome. While females may sometimes exhibit fewer overt support needs, they can be as significantly affected as males. This complexity highlights the necessity for individualized approaches to support and intervention.
Reproductive health is a broad topic, covering the physical and emotional components of areas like puberty, sexuality, reproductive options, and family planning. These topics can be challenging to cover, but they are important!
Topics covered include considerations to take into account when looking into post-secondary education options, resources to help prepare for puberty, strategies (with examples) on how to support task initiation and completion, and backward and forward chaining and transitions.
Barbara Haas-Givler, from the Geisinger Fragile X clinic in Pennsylvania, gave a talk at the 18th NFXF International Fragile X Conference about executive functioning — what it is, how to identify it, and strategies for improving it. While the title says it is for girls, this video has ideas that everyone can use — boys and girls, young and old, even moms, dads, and other caregivers.
Experts in the field discuss support and solutions for females with Fragile X in this panel discussion and Q&A.
Dr. Marcia Braden presents a webinar about females and Fragile X syndrome. Whether you are a parent of a female with FXS, an adult female with FXS, or a professional working with females, this webinar will help you better understand the features associated with the syndrome. Information processing, cognitive strengths and weaknesses, and social issues are also discussed, including strategies to address each.