Category: FXCRC and Clinics

Reasons to Visit a Clinic

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, speech, occupational, physical and behavioral therapy, and genetic counseling. Additional specialist services may include referrals to psychiatrists, psychologists, neurologists, cardiologists,

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 areas of raising your child or children. Just as importantly, once you establish a relationship with the Fragile X doctor,



Consensus of the Fragile X Clinical & Research Consortium on Clinical Practices

The Guidelines represent expert consensus and not evidence-based studies. The clinical committee of the Fragile X Clinical & Research Consortium (FXCRC) could be thought of as a “consensus panel” since virtually every clinician in the USA seeing and managing a large number of patients with Fragile X syndrome and other Fragile X-associated Disorders is represented.



Introducing the Vanderbilt Fragile X Clinic

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.



FORWARD: A Research Project of the FXCRC

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.



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 of inherited intellectual or developmental disabilities, and the most common known single-gene cause of autism. The grant will be used



How Common are Medical Problems in Fragile X Syndrome?

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 with Dr. Sharon Kidd, the FXCRC National Coordinator, set out to determine the most common medical problems found in individuals with



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 of the CDC. FORWARD stands for Fragile X Online Registry With Accessible Research Database. It is a project funded by



Obituary: UC Davis scientist Chris Iwahashi, 58, was Dedicated to Fragile X

Chris Iwahashi

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 understanding the causes of disorders related to the Fragile X gene. Ms. Iwahashi obtained her biochemistry degree from UC Davis in



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 thought were the most important problem behaviors seen in their children and whether they had faced a decision about seeking



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) The IBR and the National Fragile X Foundation (NFXF) are pleased to announce better than expected progress in the collection



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 out whether drugs or behavioral interventions work is whether there are changes to “quality of life” – that is, whether



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?

by NFXF

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.