The NFXF Blog
Research: Experiences and Decision-Making Processes
The focus of this research is on understanding how couples communicate about genetic testing in regards to their children and how they decide about future children knowing there is a potential or actual genetic risk.
Summer Student Fellowship 2016 Awards
Each year, the National Fragile X Foundation funds one or more summer student research fellowships at $2500 each through the NFXF Summer Fellowship Research Fund. The student’s work can be in the area of Fragile X syndrome (FXS), Fragile X-associated tremor/ataxia syndrome (FXTAS) or Fragile X-associated primary ovarian insufficiency (FXPOI). This award is meant to introduce undergraduate students, or students in professional training programs, to research in the Fragile X field, by providing funding for a summer project. We understand the importance of investing in the future of Fragile X, and this award is part of our commitment to fostering the researchers of tomorrow.
FXTAS Caregivers: There is Help!
Family caregivers play a critical role in managing the needs of individuals with FXTAS throughout the course of the illness. People with FXTAS rely on caregivers for a wide range of support—preparation of meals, household chores, transportation, medications, bathing, dressing, feeding, physical, emotional and social care, and managing family money.
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…
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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 [...]