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Robert Miller National Fragile X Foundation Member of the FXCRC Steering Committee I recently returned from a meeting of the Fragile X Clinical & Research Consortium in Houston where my NFXF colleagues Sharon [...]
Join us as we speak with Vicki Sudhalter, PhD, about Individualized Education Plans (IEP). Hosted by Robert Miller with Jayne Dixon Weber. The Individualized Education Plan (IEP) is a very influential document in the academic [...]
Dr. Berry-Kravis presents a one hour Q&A about what we’ve learned from the FORWARD data on aging for individuals living with Fragile X syndrome.
Barb Haas-Givler presents a one-hour Q&A session on resources and strategies for the classroom, home, and community.
Most individuals with FXS cannot state themselves that they are anxious and self-report is needed in current standardized assessments. The information analyzed in this study will result in the development of a measure where observable and quantifiable data on anxiety in those with FXS can become an outcome measure to be used in future research/trials.
Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives By Reymundo Lozano, Talia Thompson, Jayne Dixon-Weber, Craig A. Erickson, Elizabeth Berry-Kravis, Sara Williams, Elizabeth Smith, Jean A. Frazier, Hilary [...]
Jayne Dixon-Weber shares top takeaways from Barbara Haas-Givler's conference presentation strategies for improving executive functioning for girls with Fragile X syndrome
Jayne offers advice to Fragile X families in transitioning back after post-COVID-lockdowns, from school, to housing, to work, and more.
Many thanks to Brenda Finucane for this webinar to help each of us understand the genetics of Fragile X. Brenda is a professor and licensed genetic counselor at Geisinger’s Autism and Developmental Medicine Institute in Lewisburg, PA.
Care for women with FXPOI who struggle with infertility and the health effects of early onset ovarian insufficiency, including hot flushes, night sweats, and risks of osteoporosis. With Heather Hipp, Jennifer Barber, and Keiko Mathewson.
