Planning Your Visit to a Fragile X Clinic
Why should you visit a Fragile X clinic? Because you won’t hear, “Fragile what?” You will have the opportunity to meet with a team of people who will be able to provide guidance in many [...]
CDC Awards $1.75 Million Grant to Expand Nationwide Registry for Fragile X Syndrome
A $1.75 million grant to continue research on Fragile X syndrome was given to the Institute for Basic Research (IBR), Willowbrook, by the Centers for Disease Control. Fragile X syndrome is the most common known cause [...]
How Common are Medical Problems in Fragile X Syndrome?
Are medical problems more common in individuals with Fragile X syndrome than in typically developing children? To help answer that question and guide pediatricians in caring for individuals with FXS, clinicians from the FXCRC set out to determine the most common medical problems found in individuals with FXS.
News from the FORWARD Project!
This project was funded by a CDC cooperative agreement with Dr. Ted Brown (#1U19DD000753-01). Disclaimer: The findings and conclusions in this report are those of the authors and do not necessarily represent the official position [...]
Obituary: UC Davis scientist Chris Iwahashi, 58, was Dedicated to Fragile X
On July 16, 2014, Christine Iwahashi, a research biochemist for more than 30 years at , died of recurrent breast cancer at the age of 58. Since 2001, she has dedicated her life to [...]
Parent Survey Results: Insights To Appear in Research Grant
A few months ago we asked the parents of children and adult offspring with Fragile X syndrome (FXS) in the National Fragile X Foundation (NFXF) community to answer a few questions. We asked what parents [...]
Continued Success of the FORWARD Project
New York State Institute for Basic Research (IBR) and the Fragile X Clinical and Research Consortium (FXCRC) Continue To Make Great Strides with the CDC supported Fragile X Online Registry With Accessible Research Database (FORWARD) [...]
Survey: The Quality of Life for Children with FXS
Please help the NFXF and the Fragile X clinics gather information about the quality of life for children with Fragile X syndrome (FXS) and their parents across the country. One of the ways of finding [...]
NFXF Founder Receives Distinguished Scholarly Public Service Award
"I can think of no one more deserving of this honor. Although a physician and scientist, Randi is a public servant in the true sense of the title. Her passion to bring positive change to the lives of individuals and families impacted by Fragile X and autism sets the bar. We at the National Fragile X Foundation are proud to carry on the work that Randi started 30 years ago when she established the NFXF. The families we serve sleep better at night knowing that Randi is on the job. We offer our most heartfelt congratulations and thanks to Randi on the occasion of this well deserved award." said Jeffrey Cohen, NFXF interim executive director.
The Fragile X Clinic: What Does It Mean For You?
At our clinic in Boston we often hear families ask why they should go to a Fragile X clinic if they are happy with the care they are currently receiving from their local providers. The main reason is that our clinics specialize in all things Fragile X—we get you and your child. Everyone here—clinicians, genetic counselors, social workers, therapists, and all other members of the clinic—knows Fragile X syndrome (FXS).
UC Davis MIND Institute Joins Ranks of Elite US Neurodevelopmental Centers
Congratulations to the UC Davis MIND Institute—a member of the Fragile X Clinical & Research Consortium— for being named an Intellectual and Developmental Disabilities Research Center. Only a handful of neurodevelopmental centers hold that distinction, and we’re proud to call them our friends and colleagues in the Fragile X community.
Exciting New Awards Granted!
Justin Silver The National Fragile X Foundation is pleased to announce the 2013 recipients of The Justin Silver Award for Innovative Services. Established by the Silver Family in honor of their son Justin, these [...]
FXCRC Clinic Visit Evaluation Survey
The National Fragile X Foundation (NFXF) and the are pleased to share the new online Clinic Visit Evaluation with those who have visited one of the clinics in the consortium. The evaluation [...]
UI Opened the State's First Fragile X Clinic in 2010
Logan Edwards Fragile X — a rare chromosomal mutation — is difficult to recognize, but those advocating for its treatment say they hope the University of Iowa Hospitals and Clinics will bring better local [...]
$2.2 Million Grant To Enhance Public Health Knowledge About Fragile X Syndrome
From the New York State OPWDD press release (STATEN ISLAND) The New York State Office for People With Developmental Disabilities' (OPWDD) Institute for Basic Research in Developmental Disabilities (IBR) has been selected to receive a [...]