Navigating Challenging Behaviors — Webinar
Tracy Stackhouse, MA, OTR/L, Lauren Moskowitz, PhD, Jennifer Epstein, PsyD, and Missy Zolecki joined us for a one-hour Q & A discussing Navigating Challenging Behaviors.
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.
Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 23
Announcing FY 2023 federal research funding opportunities across six award categories available for all Fragile X- associated conditions and disorders.
Home for the Holidays: Making the Visit Comfortable
A reader asks (and we answer): I heard it can be challenging for individuals with Fragile X to meet new people and be in new situations. Do you have any tips on making the children feel comfortable?
Tips for Flying on an Airplane
Traveling with your young or adult child with Fragile X syndrome on an airplane can be very stressful for both of you. These tips are provided by parents based on their experiences with their own children. Find what works for you, your child, and your family.
Medications for Fragile X Syndrome
Dr. Craig Erickson answers listener questions on medications for 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 — Therapy Programs for You and Your Child
If you’re the parent of a child with Fragile X syndrome, you’re probably very familiar with mouth stuffing. Mouth stuffing for kids with FXS is usually an adaptive means of trying to succeed with eating.
How to Help Your Child Cope with COVID-19
Dr. Marcia Braden provides tips and resources, including social story and visual schedule templates, to help you and your children during the COVID-19 pandemic.
Should I Use Cogmed Intervention for Memory and Attention in Fragile X Syndrome?
The NFXF's Clinical Trials Committee provides family-friendly recommendations on the use of Cogmed intervention for memory and attention in Fragile X syndrome.
A Computer-based Intervention for Memory and Attention in Fragile X Syndrome
A research team from the UC Davis MIND Institute recently published findings from a study using a computer program called Cogmed to train memory, flexible thinking, and attention in children and adolescents with Fragile X Syndrome. Referred to as ‘executive function’ - memory, flexible thinking, controlling impulses, and attention are problems characteristic of individuals with Fragile X Syndrome. The computer program was employed with 100 children and adolescents with Fragile X Syndrome – presenting them with challenging visual and auditory tasks involving memory and attention and challenging them to think flexibly in order to complete those tasks.
Managing Anxiety … What Works And Why?
Most children who come to see me have a combination of developmental delays, communication challenges and symptoms of anxiety, resulting in frequent tantrums. It is common for parents to share details about their daily struggles.
8 Tips on Transitioning Your Child to Adult Services
Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Here we present eight tips based on research from Morgridge College of Education at the University of Denver.
Enjoying the Fall (including Halloween!) with Sensory Challenges
Halloween can offer challenges for children with Fragile X syndrome. Here we present activity ideas for you to consider, but the important point is to find what works for your family—and maybe it will lead to a new tradition.
Building Social Supports: A Guide for Parents
Limited social skills, social anxiety, and an often narrow range of interests contribute to the difficulties of making new friends.