The NFXF Blog
Study: Our Fragile X World Registry
Our Fragile X World collects data from families using online surveys and in-person studies. Topics covered include sensory or behavioral challenges, health care experiences, and the impact of Fragile X on families.
The Unregulated Life of COVID-19 is No Laughing Matter
Tracy Stackhouse teaches us the importance of self-regulation in individuals with Fragile X syndrome.
Study: Cognition, Balance, and Walking Patterns in Males With a Premutation
Doctors at Rush University are researching cognition, balance, and walking patterns in people who carry a premutation in the Fragile X (FMR1) gene.
How Do We Cope with the Current Circumstances
In this new recording, Marcia Braden discusses strategies for daily living with COVID-19. She discusses how anxiety can fuel behavior, and she gives ideas on how to set up your day and accommodations you can make to help keep anxiety at a minimum.
How To’s of Sensory Diets in Fragile X Syndrome
How To's of Sensory Diets in Fragile X Syndrome is the new video for this special time from Tracy Stackhouse from Developmental FX. A sensory diet is an occupational therapy intervention strategy devised to attain and maintain appropriate arousal states throughout each day.
Mindfulness and Me with Tracy and Ruth
From our good friends at Developmental FX, Tracy and Ruth on using movement and meditation to deal with the anxiety and challenges of daily life being turned upside down.
My Child is Home… Now What?? Play Skills
In this webinar, Rebecca Shaffer guides us through some pointers about how to build play skills while your children are at home, and some great resources for thinking through different play opportunities while they’re at home.
17th NFXF Fragile X Conference Cancelled Due to COVID-19
This post was written when the conference was cancelled due to COVID-19 concerns ... but now the conference is back on, and is virtual!
When Disappearing Acts Are a Good Thing
Behavior can often be misunderstood and punished because the parent or caregiver doesn’t recognize its function for the child. Caregivers must look behind the behavior to learn what they’re trying to communicate.
My Child Is Home… Now What? Managing Behavior
In this webinar, Rebecca Shaffer walks us through what your child is telling you, strategies to prevent the behavior, reinforcing good behaviors, and building new skills.
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.
We’re Here to Help During This Extraordinary Time
LINDA SORENSEN — With most of us staying at home now, we’re committed to providing you with the most timely and meaningful educational resources we have available. This includes sharing a series of articles, video series, and webinars.
