The NFXF Blog
Research: A Cognitive Test Battery for Intellectual Disabilities
National Institutes of Health A Study Funded by the National Institutes of Health The purpose of this research is to explore whether certain types of intellectual or cognitive tests are reliable, valid and [...]
TX: Awareness Walk
Join Texas Fragile X Association for their annual awareness walk!
NFXF Advocacy Update: The ABLE Act and More
Congress is moving forward on our two key asks: Reps. Harper and Engel have sent their cosigned letter to the House Appropriations Committee asking for support for research at [...]
Planning for Emergency Events at School
With the anxiety and hyperarousal seen in children with Fragile X syndrome, it is important to plan for emergency events at your child’s school – a fire in the building and severe weather events, such as a tornado, a hurricane, a local fire, a chemical spill, etc. Lockdowns are discussed separately. If at all possible, develop a plan ahead of time, ideally at your child's IEP. If that is not possible, ask for a meeting to discuss this first thing of the school year.
Western Massachusetts Hosts Rollerskating Event
[mpc_image preset="preset_2" image="27485" margin_divider="true" margin_css="margin-bottom:15px;" image_size="700_thumb" image_opacity="100" image_inner_border_gap="0" effect="none" image_hover_opacity="100" mpc_ribbon__disable="true" animation_in_type="transition.expandIn" animation_in_offset="100" animation_in_duration="1200" animation_in_delay="600"]On April 2, Western Massachusetts Fragile X hosted a rollerskating event for local families. The event was private, and to ensure [...]
MN: Annual Picnic
Join Fragile X of Minnesota for a family picnic!
Will You Do Anything for Fragile X?
Someone you care about lives with Fragile X. That person is your child, grandchild, brother, sister, nephew, cousin, friend, classmate or co-worker. That’s why you’re here. Today, we’re asking you if you would do #AnythingForFragileX!
Adult Living Situations and Fragile X — Webinar
As your child gets older, there are many decisions to be made. One of the biggest decisions is determining the best living situation for your young adult.
A Holistic Approach to Toilet Training
The challenges of toilet training can be magnified for families of children with Fragile X syndrome. It's not simply that toilet training is delayed, it often requires specific behavioral techniques that address their physical and behavioral phenotypes.
Verbal Perseveration! Verbal Perseveration!
Let's discuss verbal perseveration (VP), a very typical and pervasive aspect of language in Fragile X syndrome. Does VP interfere with daily living and activities? You bet your boots it can!
KS: Fragile X Fundraising Dinner
Join Northeast Kansas for their 1st Fragile X Fundraising Dinner! Good food, good times and best of all, a good cause. Don't miss this amazing opportunity!
Living Settings for Adults with FXS
As your child grows into a young adult, you may consider independent or semi-independent living settings. There are a variety of living settings across the United States for people with developmental disabilities.