Exploring Potential Barriers to the Fragile X Syndrome Cascade Screening Process
Are you an adult with a family member who has been diagnosed with Fragile X syndrome (FXS) or with the FXS premutation? Help us learn about your experiences with the FXS screening process. Researchers [...]
The 1990’s 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 WHATSyndrome?!” In the 1990’s, 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 intellectual disabilities grieve the loss of a loved one. Researchers are currently gathering information on how children with intellectual disabilities experience [...]
Language Learning in Children: Vocabulary Acquisition in a Meaningful Context
Do you have a 5 to 10 year old child with Fragile X syndrome? Participate in this remote research study and help researchers understand how children learn words. Researchers at the Neurodevelopmental Language and [...]
Lunch & Learn Series: Single-Dose Medication Study Results in Fragile X Syndrome
Drs. Craig Erickson, Laura Hess, Kerrie Chitwood, and Rebecca Shaffer joined us for a one-hour Q & A discussing the benefits of a multidisciplinary team.
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 – 1990’s
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.
2024 NIH Fragile X Centers of Excellence — Webinar
Hear updates about the NIH-funded Fragile X Centers of Excellence, which support research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.
Baclofen-associated neurophysiologic target engagement across species in Fragile X syndrome
Authors: Carrie R. Jonak , Ernest V. Pedapati, Lauren M. Schmitt, Samantha A. Assad , Manbir S. Sandhu, Lisa DeStefano, Lauren Ethridge, Khaleel A. Razak, John A. Sweeney , Devin K. Binder and Craig [...]