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8 09, 2017

Home Schooling and Fragile X

By |2023-03-13T14:10:25-04:00Sep 8, 2017|Education, Treatment and Intervention|Comments Off on Home Schooling and Fragile X

Whether you have decided to home school your child for a year or for an extended period, developing a curriculum can be a challenge. Start by setting goals for your child, research and experiment [...]

23 08, 2017

Lesson Planning Guide

By |2021-06-29T14:10:22-04:00Aug 23, 2017|Education, Treatment and Intervention|Comments Off on Lesson Planning Guide

Download the Lesson Planning Guide A Practical Approach for the Classroom This guide is intended for classroom teachers who may have little or no exposure to Fragile X syndrome (FXS). Our goal is to help [...]

9 02, 2017

Critical Incident Management for Mothers of Children with Fragile X Syndrome

By |2024-05-10T11:09:47-04:00Feb 9, 2017|Carriers|Comments Off on Critical Incident Management for Mothers of Children with Fragile X Syndrome

Dealing with critical incidents is very important for caregivers of individuals with Fragile X syndrome (FXS), particularly biological mothers. Unfortunately, critical incidents occur frequently for many caregivers of children with FXS. Behavioral outbursts and aggression are critical incidents that take place in the home or in the community. For biological mothers of children with FXS who carry the premutation gene, there is the added predisposition to anxiety, as well as other emotional concerns (Coleman & Riley, 2014), which can amplify their response to these critical incidents.

16 11, 2016

Annual Appeal

By |2016-11-16T10:51:52-05:00Nov 16, 2016|Annual Fund|Comments Off on Annual Appeal

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31 08, 2016

Visual Wizardry: Using Visual Supports to Change your Child’s Life

By |2023-06-14T16:19:23-04:00Aug 31, 2016|Behavior, FXS, Support and Resources|Comments Off on 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.

8 08, 2016

2015 Annual Impact Report

By |2017-07-27T13:00:50-04:00Aug 8, 2016|Annual Report|Comments Off on 2015 Annual Impact Report

The 2015 Annual Impact Report highlights the past year show that Together, We're Stronger!

11 05, 2016

FXTAS Caregivers: There is Help!

By |2024-01-21T17:19:40-05:00May 11, 2016|FXTAS|Comments Off on 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.

15 04, 2016

The Colombia Project of Hope

By |2022-08-17T16:21:40-04:00Apr 15, 2016|Research|Comments Off on 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.

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