I was honored to have been invited to represent the Fragile X community and the NFXF at the recent meeting sponsored by Neuren Pharmaceuticals, in which they shared some very encouraging news regarding their Phase [...]
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 [...]
In a report earlier this year, Yahoo News and Katie Couric shared insight on Fragile X and its link to autism and other well-known conditions. In that report, she asked an important question: “If the [...]
Katie Couric and her news team contacted us about featuring Fragile X on Yahoo News with Katie Couric. We’re excited to announce that they will be airing the piece soon! The news piece features interviews with NFXF Co-Founder Dr. Randi Hagerman, NFXF Board member Brain Silver and his wife Shari...
In their article, “Public Health Research on Fragile X Syndrome”, the CDC explains their Fragile X syndrome (FXS) data collection progress, and results from a recent stakeholder meeting where they identified public health gaps. The [...]
Co-Founder of the NFXF honored with one of the most prestigious awards for pediatricians in the United States Randi Jenssen Hagerman, co-founder of the National Fragile X Foundation (NFXF) and medical director of the [...]
Three research teams receive funding over next five years The National Institutes of Health (NIH) is making funding awards of $35 million over the next five years to support the Centers for Collaborative Research in [...]
The inspirational story behind an innovative game concept that may help children with Fragile X manage transitions Ben Moelis’ connections to Justin Silver runs deep. Their sisters took swimming classes together, their families go apple [...]
"Adaptive skills as measured in the study worsen relative to typical peers,” said Dr. Berry-Kravis. “They do not actually get worse in that the children with Fragile X syndrome are not regressing or losing skills.” [...]
The Fox news piece highlighted an original research article, by Drs. Daniele Piomelli and Olivier Manzoni and colleagues, that found boosting the production of a natural marijuana-like chemical in the brain, 2-AG, called an endocannabinoid, could restore normal brain function and behavior in the mouse model of Fragile X. Although this finding is very exciting, don’t make the marijuana brownies just yet!
Leah Sugarman, a Fragile X mom and an active member of the Eastern Massachusetts Fragile X CSN group, shares her story about the first time her son opened up about his little brother with special needs…
Colleen McGavin, a student at the University of Michigan Medical School, explains to the medical community that her brother with Fragile X is not just "a case of Fragile X" but a "beautiful, complex, vulnerable, [...]
The NFXF was excited to read this announcement from the University of Michigan Health System. There are a number of dedicated scientists and clinicians working on FXTAS, however new treatments have been slower in coming than for Fragile X syndrome.
The NFXF is pleased to see the recent publication of “Newborn, Carrier, and Early Childhood Screening Recommendations for Fragile X" in the prestigious “Pediatrics: Official Journal of the American Academy of Pediatrics.” At the urging [...]
Brandon Reynolds, the author of the article Changing Minds: Advocates Reshape How We Think About Autism which recently appeared in the SF Weekly, has a brother with Fragile X syndrome and has been a past contributor to the NFXF’s Foundation Quarterly. The article features quotes from our executive director, Robert Miller, FX expert and medical director at UC Davis’ MIND Institute, Randi Hagerman, and several FX parents.