Are medical problems more common in individuals with Fragile X syndrome (FXS) than in typically-developing children? To help answer that question and guide pediatricians in caring for individuals with FXS, clinicians from the working [...]
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 [...]
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 [...]
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 [...]
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) [...]
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 [...]
"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.
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).
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.
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 [...]
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 [...]
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 [...]
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 [...]
