While every Fragile X clinic is set up a little differently, they all offer similar services. They are staffed by people who understand Fragile X. Examples of evaluations offered at clinics through an initial intake include: medical, [...]
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 [...]
The Center for Child Development at Vanderbilt University Medical Center and the Monroe Carell Jr. Children’s Hospital at Vanderbilt are proud to announce the opening of the Vanderbilt Fragile X Clinic. The goal of the clinic is to provide a comprehensive clinical services that are tailored to the needs of individuals with Fragile X syndrome (FXS) and their families. The Vanderbilt Fragile X Clinic is a member of the Fragile X Clinical and Research Consortium (FXCRC), which is supported by the National Fragile X Foundation.
By now, many people in the greater Fragile X community have heard of the Fragile X Clinical & Research Consortium (FXCRC). Organized by the National Fragile X Foundation in 2006, it was originally called the “Fragile X Clinics Consortium,” and the emphasis was solely on establishing clinics that provided comprehensive evaluations and consensus-based treatment or treatment recommendations. All well and good and, today, there exist 29 clinics in the US. However, within the first year or two, the word “Research” was added to the consortium’s name at the urging of Dr. Don Bailey, who was then the NFXF’s board chair. Dr. Bailey was prescient in his realization that research would become an important part of the consortium’s efforts. Soon thereafter, the Centers for Disease Control (CDC) partnered with NFXF and the FXCRC, and the infrastructure was built to begin to make a real difference in our understanding of Fragile X syndrome (FXS). This article will take a look at what the FXCRC is up to as far as research is concerned.
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 [...]
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.
In November 2013 Fragile X researchers led by MIND Institute Medical Director Randi Hagerman visited the Valle del Cauca District and the small town of Ricaurte, Colombia, which for years has been known to have a very high prevalence of individuals with intellectual disability and more recently this was found to be Fragile X syndrome. The NFXF was along on this journey of discovery.