The NFXF Blog
American Idol’s Sophia James Introduces Her Brother James — Who Has FXS — to 8 Million Viewers
American Idol contestant Sophia James (formerly Wackerman) introduces her brother James, who has Fragile X syndrome, to more than 8 million viewers. Sophia took to social media to help spread awareness and advocate for Fragile X.
Female Power to Fight a Crisis — Presentation
Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.
A COVID-19 Social Story from NFXF
The National Fragile X Foundation has created a social story to reflect the changing requirements that governments are enacting. There’s a lot of information — and misinformation — about COVID-19 out there, but there’s no doubt it’s impacted families in many, many ways.
How to Prepare for a Telehealth Visit
Drs Rebecca Shaffer and Ernie Pedapati tell you how to prepare for your telehealth visit, including behavioral checkups. They are with Fragile X Clinic at Cincinnati Children's Hospital. Their advice is applicable to all visits.
Supporting Your Child with Fragile X Syndrome During Special Times — Presentation
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.
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.
Assessment of Social Interaction in Fragile X Syndrome
FORWARD // An efficient and direct measure of social interactions and autism symptoms is needed for Fragile X syndrome research and clinical care.
An Unregulated Life is No Laughing Matter — Webinar
Tracy Stackhouse teaches us the importance of self-regulation in individuals with Fragile X syndrome.
Repetitive Behaviors in Fragile X Syndrome
FORWARD // These findings build on the current understanding of RRBs in Fragile X syndrome based on gender and comorbid ASD.
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.
The How Toʼs of Sensory Diets in Fragile X Syndrome — Webinar
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 — Webinar
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.