The NFXF Blog
Oppositional or Merely Anxious?
Children with and without Fragile X syndrome learn to maneuver their environments in order to survive and thrive. In order to discern whether a behavior is oppositional, or merely a reaction to anxiety, pay attention to your reaction.
Research Study of Children with Fragile X Syndrome at Georgia State University
If your child is between six and 17 years of age, Georgia State University is interested in studying their walking pattern and bone mineral density.
Nebraska Launches the ENABLE National Program
The National Fragile X Foundation is pleased to announce that the state of Nebraska has now launched its version of an Achieving A Better Life Experience (ABLE) account. Known as the “ENABLE” national program, it offers enrollment to qualified individuals with disabilities both in Nebraska and throughout the country.
Prioritizing the Relationship with your Spouse while Raising a Special Needs Child
Raising a child with special needs is challenging enough for an individual. When you factor in a relationship, the challenges increase, and the consequences for not caring for yourself and your relationship are more significant.
Sibs Night Out in St. Louis
St. Louis siblings had a great May Day supporting each other and being crafty!
Western Massachusetts Fragile X Participates in Local Camp
On June 22, 2016 the Western Massachusetts Fragile X group spoke at Kamp for Kids. Kamp for Kids is a camp specifically for kids with special needs. Pat, son of leader, Denise Devine, attended when he [...]
Teaching Pro-Public Behavior: Public or Private?
How do we prepare our children to access their communities, without the risk of their being exploited, 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?
Tennessee Launches ABLE TN Program
The National Fragile X Foundation is excited to announce the State of Tennessee’s launch of the country’s second Achieving a Better Life Experience (ABLE) program. ABLE TN is a national program, offering enrollment to qualified individuals with disabilities both in Tennessee and throughout the country.
Brief Social Skills Intervention for Fragile X Syndrome
The Translational Applied Behavior Analysis Laboratory at Stanford University is seeking boys with FXS to participate in an innovative new research study involving a brief social skills intervention and MRI brain imaging.
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.