Our own Jayne Dixon Weber pulled together a social story to use to help you and your self-advocate prepare for the NFXF Advocacy Day on February 24, 2021.
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Real-life tips from a mom, Jayne Dixon Weber, who’s already going through this with her own son, plus a a quick video from Rebecca Shaffer to guide you through the process of getting your child comfortable wearing a mask.
Timely advice from Jayne Dixon Weber for parents and families asking: What am I going to do with the children all day? How do I get supplies in the house? What if someone gets sick? What if I get sick? What about my work? What if things fall apart at home?
Back-to-school can be a time of high anxiety not only for children but for parents and staff, too. NFXF team members Jayne Dixon Weber and Holly Usrey-Roos will help families prepare for this often hectic time in this interactive webinar. Topics will include the making of a "Back-to-School" toolkit, along with discussion on preparing teachers and students for a new school year, transitions, schedules, talking to students and faculty about FXS, and working through fire drills and lockdowns.
Join the National Fragile X Foundation’s Executive Direct, Robert Miller and Coordinator of Support Services, Jayne Dixon Weber as they interview LINKS Group Leader and Fragile X parent Laureen Majeske and Developmental FX’s Tracy Stackhouse and Sarah “Mouse” Scharfenaker for a discussion on how self-regulation makes things work for Fragile X.
The International Fragile X Premutation Registry: building a resource for research and clinical trial readiness
The first published publication from the International Fragile X Premutation Registry Advisory Committee. This International Fragile X Premutation Registry is an important first step and can serve as a useful tool for clinicians and researchers in the field.
Consensus of the Fragile X Clinical & Research Consortium An Introduction to Assessing Children with Fragile X Syndrome Reading Time: 55 min.—|—Last Updated: Dec. 2021—|—First Published: June 2011—|—Download PDF Note: There [...]
Consensus of the Fragile X Clinical & Research Consortium Medications for Individuals with Fragile X Syndrome Reading Time: 190 min.—|—Last Updated: Feb. 2021—|—First Published: 2012—|—Download PDF The following [...]
The 17th NFXF International Fragile X Virtual Conference May 29–30, June 27, July 22, 2020 This is the archive page for the 2020 17th NFXF International Fragile X Virtual Conference. See the sessions, panels, [...]