Blog

Join the NFXF 2020 Virtual Graduation Celebration

Join the NFXF as we celebrate your graduation virtually, with special guest speaker Mr. Gregg Harper. Deadline: June 4, 2020.

Virtual Graduation June 6, 2pm, Sign Up Now

Sophia James to Deliver Keynote at the 17th NFXF International Fragile X Conference

The National Fragile X Foundation is thrilled to announce that Sophia James (formerly Wackerman) will be a keynote speaker on day one — May 29, 2020 — of our upcoming 17th NFXF International Fragile X Conference.

Sophia James still from video announcing her as keynote speaker for Fragile X Conference

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.

Sophia James singing and playing guitar

Female Power to Fight COVID-19 with Marcia Braden

Dr. Marcia Braden asked females living with Fragile X syndrome to give advice to other females living with FXS on how to cope with this – and future crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.

Dr. Marcia Braden

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.

Boy wearing a face mask measured 6 feet from a girl showing flu symptoms

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.

How to Prepare for a Telehealth Visit with photos of Dr Shaffer and Dr Pedapatti

Supporting Your Child with Fragile X Syndrome During Special Times

Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome during challenging times.

Barbara Haas-Givler

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.

Young child having a meltdown

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.

Tracy Stackhouse of Developmental FX

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.

Dr. Marcia Braden

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. 

Tracy Stackhouse of Developmental FX