The NFXF Blog
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.
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 [...]