The NFXF Blog
Fragile X Awareness Happens All Year
Fragile X awareness is a 365-day-a-year job, which is why it is one of our core pillars. But, we set aside July every year as a month to help raise awareness of Fragile X, and [...]
A Fun Moms’ Night Out!
Five moms met in East Windsor, CT on March 14th where they shared a meal, talked about housing, getting ready for adult services and had all around a lot of fun! One of the most [...]
CDC Funding for Fragile X – Coalition Letter
There is strength in numbers, which is why we work with other patient advocacy groups on common goals, such as funding at the National Institutes of Health (NIH), the Centers for Disease Control and Prevention [...]
MGH/Harvard Study: Assessment of Glutamatergic Neurosystem in Fragile X Syndrome for Targeted Therapy
The aim of the study is to examine problems with a chemical messenger called glutamate in the brain in Fragile X syndrome, and how it impacts sensory, motor and cognitive abilities and implicated structural and functional connectivity.
Potential FXS Drug Receives Orphan Drug Status
The drug BPN14770, which is in development for possible treatment of Fragile X syndrome, was granted orphan drug status by the FDA. As the patient advocacy organization for Fragile X, the NFXF will assist in [...]
FXS and ASD: Similar But Different
This discussion provides clinical perspectives on the behavioral differences between FXS and what are thought to be core features of autism. There is still much to be learned about identifying behaviors that suggest the presence or absence of ASD in FXS.
Volunteer Highlight: Rachel DeLine
Written by Kimberly Powell Beer is hard work! Just ask Rachel DeLine, Greater Atlanta Chapter Leader. The Greater Atlanta area has been steadily growing in the craft beer industry with more and more breweries [...]
Emory Study: Men With the FXTAS Premutation
The Modifiers of Fragile X-Associated Disorders (FX-MOD) study is trying to answer the question, why do some people develop tremor and balance issues and others do not?
Fragile X Research at the DOD
Thanks to the hard work of NFXF Advocates years ago, Fragile X is one of the authorized research areas at the Department of Defense's Congressionally Directed Medical Research Program (DOD CDMRP). Millions of dollars in [...]
A Blood Test for Autism? Not So Fast
Among families and professionals, in schools and therapeutic settings, there is already a great deal of confusion about the relationship between genetic test results and developmental diagnoses. We challenge the the notion that autism itself can be directly diagnosed through a blood test.
Help Guide Fragile X Research at NIH
Last year, the National Institutes of Health (NIH) funded $46 million in Fragile X research, an amount that has trended upwards in the past few years. Over the years, they have funded hundreds of millions [...]
Mosaicism in Fragile X Syndrome — Webinar Replay
From Brenda Finucane, a look at mosaicism in Fragile X syndrome presented to make genetics easier to understand.