Yearly Archives: 2016

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Public or Private?

By |2017-08-18T13:54:16-04:00Jun 27, 2016|Behavior, Braden on Behavior, FXS, Treatment and Intervention|

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?

Tennessee Launches ABLE TN Program

By |2016-06-20T12:44:04-04:00Jun 20, 2016|Keeping You Informed|

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.

Summer Student Fellowship 2016 Awards

By |2016-06-01T11:00:00-04:00Jun 1, 2016|Research, Summer Student Fellowship|

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.

Guardianship for Your Child

By |2016-05-25T11:00:00-04:00May 25, 2016|Adolescents and Adults, FXS|

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.

FXTAS Caregivers: There is Help!

By |2016-05-11T11:30:26-04:00May 11, 2016|FXTAS|

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

By |2016-05-06T10:07:44-04:00May 6, 2016|Opportunities for Families, Research|

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

By |2019-07-09T17:24:36-04:00Apr 28, 2016|FXS|

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

By |2016-04-19T16:33:05-04:00Apr 19, 2016|FXS, Technology|

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.

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