The NFXF Blog
[VIDEO] NFXF Rings the NYSE Opening Bell
We were invited to the New York Stock Exchange to ring the opening bell, giving us the amazing chance to raise awareness for Fragile X.
Ovid Therapeutics: Single Dose Pharmacokinetics (PK) Study
Ovid Therapeutics A Phase 1 Single Dose PK Study in Adolescent Subjects With Fragile X Syndrome or Angelman Syndrome The trial is a Phase 1 Single Dose PK [...]
Fragile X Resource Center of Missouri Hosts Business Meeting
On March 23, the Fragile X Resource Center of Missouri hosted a business meeting for all members of the group. Roughly 20 individuals enjoyed dinner, followed by the business of the group. Events since the last meeting were reviewed, along with upcoming events and opportunities. We enjoyed catching up with other following the conclusion of our business.
Research: UCD Language Intervention in Treatment for FXS
UC Davis MIND Institute [mpc_image preset="preset_2" image="11147" margin_divider="true" margin_css="margin-bottom:15px;" image_size="full" force_fullwidth="true" 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"] Now Recruiting Research Participants: Combining Lovastatin and a Parent-Implemented Language Intervention in [...]
Doggone It … Mantras Are Great for Learning!
Mantras, like positive affirmations, really do have power. Mantras are short, positive, instructive statements full of action words. We use them to quiet the mind and focus on thinking and action.
MO: Ladies' Afternoon Out
Ladies' Night Out! Join our St. Louis group for painting, snacks and fun!
Research: Memory Study in Children/Youth
Researchers at the University of Alberta’s Department of Pediatrics and Stollery Hospital are completing a study, looking at memory in children with a neurodevelopmental disorder or typical development. [...]
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 [...]