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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? 

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.

9 11, 2022

Webinar: Medication For Individuals With Fragile X Syndrome

By |2022-11-14T18:54:42-05:00Nov 9, 2022|Blog|Comments Off on Webinar: Medication For Individuals With Fragile X Syndrome

Dr. Craig Erickson, Medical Director at the Fragile X Clinic at Cincinnati Children's Hospital Medical Center, joins us for our 10th annual webinar focused on Medication for Individuals with Fragile X Syndrome.

25 10, 2022

Parent and Caregiver Perspectives towards Cannabidiol as a Treatment for Fragile X Syndrome

By |2022-10-25T15:07:53-04:00Oct 25, 2022|Blog, Research, Research Results|Comments Off on Parent and Caregiver Perspectives towards Cannabidiol as a Treatment for Fragile X Syndrome

Some caregivers and parents of individuals with FXS have given CBD supplements to the individuals they care for and learning about their insights and experiences is important. This was the first study to learn more about their observations and opinions regarding CBD to treat FXS.

20 10, 2022

Mosaicism in Fragile X Syndrome

By |2022-10-25T17:41:25-04:00Oct 20, 2022|Comments Off on Mosaicism in Fragile X Syndrome

Consensus of the Fragile X Clinical & Research Consortium Mosaicism in Fragile X Syndrome Reading Time: 18 min.—|—Last Updated: Oct. 2022—|—First Published: Oct. 2022—|—Download PDF Fragile X gene: Fragile [...]

14 10, 2022

NFXF Webinar Series – Housing Options for Adults with Fragile X Syndrome

By |2022-10-14T12:57:02-04:00Oct 14, 2022|Comments Off on NFXF Webinar Series – Housing Options for Adults with Fragile X Syndrome

The NFXF will present housing options for adults living with Fragile X syndrome (FXS) from the parent and professional perspectives. The webinar will be recorded and available for on-demand viewing approximately 1 week after [...]

28 09, 2022

“Wat Up?” and Other Steps to Socialization

By |2022-09-28T15:34:47-04:00Sep 28, 2022|Behavior|Comments Off on “Wat Up?” and Other Steps to Socialization

“Hey” was one of my son Ian’s first words, and what he quickly learned was that whomever he said that to responded — with something. Usually it was with a smile and friendly tone to their voice, and you know how quickly our children pick up on that positive feeling.

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