The NFXF Blog
Parents and Caregivers of Adults with Fragile X Syndrome Needed for a Survey
Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X ...
Clustering of Comorbid Conditions Among Women Who Carry an FMR1 Premutation
RESEARCH RESULTS ROUNDUP — The authors sought to clarify how often other health-related conditions, such as migraines and sleep problems, occur among women with a premutation.
Cerebellar-Cortical Function and Connectivity during Sensorimotor Behavior in Aging FMR1 Gene Premutation Carriers
RESEARCH RESULTS ROUNDUP — Investigation into how aging as a premutation carrier of the FMR1 gene may affect sensorimotor (exactly as it sounds, both sensory and motor) brain systems.
Inhibition Deficits Are Modulated by Age and CGG Repeat Length in Carriers of the FMR1 Premutation Allele Who Are Mothers of Children with Fragile X Syndrome
RESEARCH RESULTS ROUNDUP — Older mothers of children with Fragile X syndrome who have mid-range CGG repeats (~80–100) may be at increased risk for difficulties with inhibition.
Life with Fragile X: Who is Helping Who?
We’re always looking for new ways to share and raise awareness about Fragile X, life with Fragile X, and the individuals and families it affects. Here we talk with Laura Dooling and her life with three cousins with Fragile X syndrome.
Telehealth Visits: Suggestions for Parents on How to Prepare
As the option to do telehealth visits opened up over the past six months, we have gathered information to help you make the most of your online visit for your child with Fragile X syndrome, whether they are a young child or an adult.
Stopping the Stuffing
Mouth stuffing, by Mouse or anyone else, is an overfilling of the mouth with the selected food. For kids with FXS, it is usually an adaptive means of trying to succeed with eating.
The 5th Annual Bike to X Out Fragile X
The 5th Annual Bike to X Out Fragile X is in the books and another success in raising support and awareness of Fragile X in Iowa. Nancy Carlson, the NFXF Heartland Chapter leader and Fragile X mom tells us all about it.
Clinical Research Study: Brain Development in Relation to Behavior and Cognition
Males between the ages of 18 and 30 years with a diagnosis of Fragile X syndrome (full mutation) may be eligible to participate.
Fragile X Syndrome Self-Advocates Share Their Challenges and Triumphs
One of the most common questions related to Fragile X is: What limitations does a person with Fragile x syndrome have? Meet Allison Cohen, Michael Cohen, Doug Cooper, Aaron Heisel, Samantha Rhodes, Joshua Rocker, Jodi Selinger, Spencer Shelton, and Cassie Stringer.
Parent Survey: Literacy Skills in Children with Fragile X Syndrome
The Research in Neurodevelopmental Disabilities Lab at the Waisman Center at the University of Wisconsin-Madison is looking for parents of male or female children 6 to 17 years old with Fragile X syndrome for an online survey.
From One Caretaker to Another
Being the caretaker of someone with special needs, such as Fragile X syndrome, can be daunting. Isabel looks back at her journey, sharing advice and encouragement for new caregivers or those who have been doing it for years.
