By Dany Petraska|2023-03-14T11:05:46-04:00Mar 14, 2023|
School, Education and Fragile X Syndrome Children and adults with Fragile X syndrome can benefit from education and schooling. With appropriate support and accommodations, they can develop their cognitive and social skills and make [...]
By Kristin Bogart|2023-12-14T12:15:37-05:00Nov 2, 2022|Adulthood, FXS, Housing, Webinar|
Adult services may be limited and difficult to access, so how does a parent deal with that nagging question that keeps them up at night: What will happen when I’m gone?
By Hilary Rosselot|2023-05-15T12:51:57-04:00Oct 25, 2022|Blog, Research, Research Results|
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.
By Jayne Dixon Weber|2023-01-04T15:47:13-05:00Oct 20, 2022|
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 Mosaicism Size Mosaicism Methylation [...]
By Jayne Dixon Weber|2023-06-14T16:00:05-04:00Sep 28, 2022|Behavior, Daily Living|
“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.
By Hilary Rosselot|2024-11-06T15:20:06-05:00Aug 24, 2022|Blog|
AAP/CDC course, "Identification, Management, and Caring for Children and Adolescents with Fragile X Syndrome" will be available for pediatricians and other healthcare professionals through August 1, 2025, on the AAP PediaLink platform.
By Jayne Dixon Weber|2023-04-30T20:25:24-04:00Aug 2, 2022|School and Education|
For the upcoming school year, we compiled our most popular school and education resources for parents and teachers.
By Hilary Rosselot|2023-05-18T17:30:10-04:00Jun 23, 2022|Blog, Research, Research Results|
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.
By NFXF|2024-07-12T17:21:01-04:00Jan 7, 2022|
Contact Us If you have questions, need help, or just want to share, we’re here Monday thru Friday, 9 AM to 5 PM ET, with the usual holidays as exceptions. We have a [...]
By Dany Petraska|2022-01-04T12:19:59-05:00Dec 29, 2021|
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 [...]