The NFXF Blog
How the NFXF has Informed the Community Through the Years
The NFXF has continually adapted to the times when it comes to the best ways to communicate with the Fragile X community.
Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 24
Announcing FY 2024 federal research funding opportunities across six award categories available for all Fragile X-associated conditions and disorders.
Exploring Potential Barriers to the Fragile X Syndrome Cascade Screening Process
Researchers at the University of Memphis and Cincinnati Children's Hospital Medical Center are conducting a research study exploring the relationship between barriers and the FXS screening process among family members.
The 1990s and the NFXF Becoming a True National Organization
Thankfully, we’ve come a long way since the day when FXS was jokingly referred to as “Fragile WHAT Syndrome?!” In the 1990s, many changes were taking place as a result of the increased scientific study of Fragile X and how the growing body of knowledge was impacting the work of the Foundation.
I Have the Fragile X Premutation…Now What?— Webinar
Drs. Deborah Barbouth, Emily Allen, Reymundo Lozano, and David Hessl joined us for a one-hour Q & A discussing the Fragile X Premutation.
Sensory Symptoms and Signs of Hyperarousal in Individuals with Fragile X Syndrome
FORWARD // Researchers conducted the first comprehensive analysis of characteristics of sensory symptoms in children with FXS and their impact on families.
Grief and Bereavement Experiences of Children with Intellectual Disabilities
Researchers at the University of Maryland are looking to understand how children with Fragile X syndrome (FXS) and other intellectual disabilities grieve the loss of a loved one. If you are the parent or guardian of a child with FXS or another intellectual disability who has experienced the death of someone in their life when they were 5-17 years old, researchers want to talk to you.
Language Learning in Children: Vocabulary Acquisition in a Meaningful Context
The University of Washington's Neurodevelopmental Language and Learning (NeuDLL) Lab is conducting research addressing how children learn words in stories and the skills that support learning. Participation is remote and can be completed from home. Sessions are scheduled at your convenience.
Lunch & Learn Series: Single-Dose Medication Study Results in Fragile X Syndrome
Dr. Craig Erickson joined us for a 45-minute webinar where he presented the results of a single-dose medication study in FXS and then answered questions during a moderated Q&A.
Fragile X Program at Thompson Autism and Neurodevelopmental Center, Children’s Hospital of Orange County
Learn more about the CHOC Fragile X Program, what to expect when you visit, and meet Drs. Sailaja Golla and J. Thomas Megerian.
Study: Recording the Experiences of Black and Hispanic Mothers who have Children with Fragile X Syndrome
Are you a Black or Hispanic woman raising a child with Fragile X syndrome? Researchers want to hear about your experiences. The South Carolina Family Experiences Lab is conducting 30-minute interviews to learn about [...]
The National Fragile X Foundation — The Early Years: 1984–1990s
The focus in the early years of the NFXF was to “get the word out!” During that time period, the inherited nature of Fragile X was not fully understood. However, early pioneers in the Fragile X world, such as Dr. Stephanie Sherman and Dr. Ted Brown, were steadily making progress in sorting out the genetics.