Stopping the Stuffing
Mouth stuffing, by Mouse or anyone else, is an overfilling of the mouth with the selected food. For kids with FXS, it is usually an adaptive means of trying to succeed with eating.
Early Check for Fragile X Syndrome Launches in North Carolina
Early Check is a new research study, led by RTI International and a group of distinguished partners, is now available for newborn babies in North Carolina. Fragile X syndrome is included in the screening. From »
Potential FXS Drug Receives Orphan Drug Status
Yesterday, the drug BPN14770, which is in development for possible treatment of Fragile X syndrome, was granted orphan drug status by the FDA. As the patient advocacy organization for Fragile X, the NFXF will be »
Treatment and Intervention Experts Update Recommendations for Fragile X
The professionals who are part of the NFXF’s Fragile X Clinical & Research Consortium (FXCRC) and who are committed to the well-being of the Fragile X community, along with the parents on the FXCRC’s Executive »
FXS By Age Group Resource
We have just launched a new web tool - Fragile X syndrome resources, categorized by age group. The goal of the tool is to give parents, caregivers, educators, family members, etc. a one-stop-shop to find »
Living Settings for Adults with FXS
As your child grows into a young adult, you may consider independent or semi-independent living settings. There are a variety of living settings across the United States for people with developmental disabilities.
The Unique Challenges for Females with Fragile X Syndrome
Virtually all of my previous columns have addressed in one way or another the behavioral issues of males with Fragile X syndrome (FXS). That is largely because males experience both greater frequency and severity of symptoms. However females with FXS do present a variety of challenges as well so this special, expanded column will be dedicated to addressing some of them.
Visual Wizardry: Using Visual Supports to Change your Child’s Life
Visual supports help translate the environment and expectations to an individual with FXS without requiring direct processing of language. This type of information can be processed quickly. Visual supports remain present, so they can be referred to more than one time, whereas verbal directions might be heard and then forgotten. Learning to use visual supports can help alleviate anxiety for the person with FXS and frustration for the person providing support.
Public or Private?
How do we prepare children and adolescents to access their communities,without running the risk of their being exploited, or showing affection in inappropriate ways, using sexual language that may be misconstrued, or touching body parts that could bring legal action, or at the very least a disgruntled public?
Guardianship for Your Child
At the age of 18, children become legal adults, which means that you – as a parent – are no longer your child’s legal guardian, even if they have Fragile X. In order to continue helping your child take care of his or her self, make decisions in your child’s own best interests and handle their assets, you have to initiate a process of assuming legal guardianship of your child.
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.
Talking with Your Children about Fragile X: Why, How, and When?
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.
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 »
