A Video Message From Shionogi
Following recent updates on Shionogi’s EXPERIENCE clinical trials, a video message from Juan Carlos Gomez of Shionogi & Co., Ltd.
American Idol’s Sophia James Introduces Her Brother James — Who Has FXS — to 8 Million Viewers
American Idol contestant Sophia James (formerly Wackerman) introduces her brother James, who has Fragile X syndrome, to more than 8 million viewers. Sophia took to social media to help spread awareness and advocate for Fragile X.
Neuren’s Trofinetide Successful in Phase 2 Clinical Trial in Fragile X Syndrome
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 [...]
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 [...]
Katie Couric and Yahoo News Partner with the NFXF for Fragile X Awareness Month
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 to feature Fragile X on Yahoo News!
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...
Randi Hagerman Receives C. Anderson Aldrich Award from American Academy of Pediatrics
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 [...]
NIH awards $35 Million for Fragile X Research
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 [...]
Coping Skills and Fragile X Syndrome: A Response from Dr. Cheryl Klaiman
"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.” [...]
Huber: A Response to "Marijuana-like Brain Chemicals" Possible Treatment for FXS
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!
How My Son Finally Opened Up About His Little Brother With Special Needs
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…
More Than a Case of Fragile X
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, [...]
New Research Leads to Better Understanding of FXTAS
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.
Published: Newborn, Carrier, and Early Childhood Screening Recommendations for Fragile X
The NFXF is pleased to see the recent publication of Newborn, Carrier, and Early Childhood Screening Recommendations for Fragile X in Pediatrics, the official Journal of the American Academy of Pediatrics.
Changing Minds: Advocates Reshape How We Think About Autism
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.