The NFXF Blog
Purdue University Phenotype Survey
Little is known about the early psychosocial and family development of young children with neurodevelopmental disorders. The goal of this study is to partner with families affected by these conditions to better understand children’s individualized strengths and needs.
The Many Functions of Perseveration
Anyone who lives with a person with Fragile X is very familiar with this continuation of a repeated word or phrase. This repetition can be maddening when you are the recipient. At face value, perseveration has no redeeming features and simply serves as an irritant, but in the life of one with Fragile X syndrome (FXS), it can be a valuable asset. Perseverative verbiage often accompanies arousal and acts as a buffer to reduce the anxiety. The repetition can be comforting like a mantra or song.
The Magic Continues: Helpful Tool for Children with Fragile X to be Turned into App
In 2014, Sarah Moelis and her brother, Ben, exhibited "The Magic Arrows," a game that Sarah, Ben, Hailey Silver and J.D. Gebbia invented. The game helps children with Fragile X syndrome organize their daily activities, easing the anxiety often triggered by transitioning from one activity to another. Sarah is on-course to unveil the commercial release of "The Magic Arrows" app before the start of conference. Sarah is looking for volunteer families who are part of the Fragile X community to be part of a limited test group this June. Volunteers will use the 1.0 version of the app and provide feedback.
The Colombia Project of Hope
The NFXF and UC Davis MIND Institute investigate the high number of people in Ricaurte, Colombia, with intellectual disabilities. An amazing story.
My Last Marathon is my First of Something Else…
[mpc_image preset="preset_2" image="22344" image_size="700_thumb" image_opacity="100" effect="none" image_hover_opacity="100" overlay_background="rgba(255,255,255,0.35)" overlay_enable_lightbox="true" mpc_ribbon__disable="true" animation_in_type="transition.expandIn" animation_in_offset="100" animation_in_duration="900" animation_in_delay="300"] In March of 2015, as I crossed the finish line of my last marathon, I said to anyone who could [...]
Talking with Your “Typical” Children About a Sibling’s Fragile X Syndrome Diagnosis
When parents first learn about Fragile X, their primary focus is on the meaning of the diagnosis for their child with the syndrome. Once the dust settles though, they begin to think about the genetic implications for other family members, and in particular, for typically developing siblings who may or may not carry a Fragile X mutation.
Getting and Keeping a Job
It was late summer and Ian was 18 years old and he was getting ready to start the transition program at his high school, a program for students 18-21 years old after they graduate from high school. I had to figure out how to make this work.
Preschool Word Learning Study
UC Davis MIND Institute If you have a son with Fragile X syndrome between 36 and 66 months of age, you and your child are invited to participate in a research study being conducted [...]
Omnibus Spending Bill Increases Funds for NIH
Today, Congressional leaders released the text of the omnibus spending bill that will be debated and hopefully passed before Congress adjourns for the year. The omnibus bill funds all 12 appropriations bills, including THE one [...]
Is Fragile X Research Headed for a Resurgence?
The last two years have been tough for Fragile X (FX) research. Many of us in the greater Fragile X community believed that drugs capable of reversing the core symptoms of FX were sitting on [...]
Neuren’s Trofinetide Successful in Phase 2 Clinical Trial in Fragile X Syndrome
I was honored to have been invited to represent the Fragile X community and the NFXF at the recent meeting sponsored by Neuren Pharmaceuticals, in which they shared some very encouraging news regarding their Phase [...]
Let's Talk FXS, Autism & Behavior with Tracy & Mouse
Our favorite duo, Mouse & Tracy of Developmental FX, join us to discuss Fragile X, autism and behavior. As always, they provided insight and wonderful advice to our audience - and their presence is always a delight!