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9 02, 2021

Advocacy Day Social Story

By |2021-02-09T16:22:39-05:00Feb 9, 2021|Advocacy|Comments Off on Advocacy Day Social Story

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.

29 07, 2020

Getting Comfortable Wearing a Mask

By |2020-08-07T17:21:35-04:00Jul 29, 2020|Treatment & Strategies|Comments Off on Getting Comfortable Wearing a Mask

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.

13 03, 2020

COVID-19: My child is home from school or work or a day program! What do I do?

By |2020-08-06T15:49:18-04:00Mar 13, 2020|Blog, Treatment & Strategies|Comments Off on COVID-19: My child is home from school or work or a day program! What do I do?

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? 

6 09, 2013

Let's Talk! Back to School

By |2013-09-06T15:04:55-04:00Sep 6, 2013|Webinar|Comments Off on Let's Talk! Back to School

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.

31 10, 2011

Self-Regulation Through the Life Span

By |2011-10-31T14:30:46-04:00Oct 31, 2011|Fragile Xtras, Podcast|Comments Off on Self-Regulation Through the Life Span

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.

23 06, 2022

The International Fragile X Premutation Registry: building a resource for research and clinical trial readiness

By |2022-06-29T17:08:19-04:00Jun 23, 2022|Blog, Research, Research Results|Comments Off on 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.

1 04, 2022

Our Team

By |2022-06-16T13:09:57-04:00Apr 1, 2022|Comments Off on Our Team

Meet Our Team Meet the people behind the the scenes at the National Fragile X Foundation. While we are here to serve all those living with Fragile X, we couldn’t do what [...]

29 12, 2021

An Introduction to Assessing Children with Fragile X Syndrome

By |2022-01-04T12:19:59-05:00Dec 29, 2021|Comments Off on An Introduction to Assessing Children with Fragile X Syndrome

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 [...]

20 12, 2021

Medications for Individuals with Fragile X Syndrome

By |2022-03-30T19:08:37-04:00Dec 20, 2021|Comments Off on Medications for Individuals with Fragile X Syndrome

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 [...]

19 11, 2021

The 17th Biennial NFXF International Fragile X Conference | 2020

By |2021-12-09T11:34:04-05:00Nov 19, 2021|Comments Off on The 17th Biennial NFXF International Fragile X Conference | 2020

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, [...]

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