2017 NFXF Summer Student Fellowship Awardees
Each year, the National Fragile X Foundation funds one or more summer student research fellowships at $2500 each through the Summer Student Fellowship Research Fund.
Visiting the Dentist
I learned pretty quickly that visits to a dentist were going to be a challenge for my son, Ian. I demonstrated the process over and over again. I helped him brush his teeth, encouraged him to brush his own teeth, tried different toothbrushes and toothpaste. I needed Bonnie.
NJ: Moms' Night Out
NJ/NY Moms' Night Out Date: June 1, 2017 Time: 7:00 PM - 9:00 PM Location: Cheesecake Factory at the Mall at Short Hills 1200 Morris Turnpike Short Hills, NJ 07078 Near Macy's, on the north [...]
Fragile X Resource Center of Missouri Hosts Dr. Elizabeth Berry Kravis
Fragile X expert, Dr. Elizabeth Berry-Kravis, presented to a great crowd and discussed issues our loved ones with Fragile X face in puberty and adulthood.
CA: Adaptive Sports and Education Night
Jacky's X-Men, along with Fragile X Northern California, will be raising awareness on 7/29 at Avaya Stadium! We will be joined by Pacific Autism Center for Education, Hope Services and several other non-profits to raise awareness!
[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 [...]
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.