The NFXF Blog
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.
Texas Walks Across the State!
Congratulations to the three Texas LINKS “pardners” for organizing their successful and fun Fragile X awareness walks on Saturday November 10th. Walkers of all ages participated in Houston, San Antonio and Dallas to raise money [...]
Seaside Therapeutics Harbor-C Trials
Seaside Therapeutics is studying the science of the brain and working to deliver treatments that improve the underlying causes of developmental disorders like Fragile X syndrome. Right now, Seaside is testing an investigational medicine called STX209 (arbaclofen) for individuals with Fragile X syndrome with social impairment. Thanks to the dedication and efforts of families, one of the clinical trials is almost complete.
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.
New LINKS Groups Sprouting Across the Country!
The is a wonderful way to get involved in the Fragile X community on a local level, to meet new families, share experiences, work together to raise awareness, advocate, fund raise, build friendships [...]
What is #GivingTuesday?
Thanksgiving is right around the corner, and for most people that means spending time with family while enjoying great meals, good times, and a big helping of gratitude. Then comes Black Friday, the day [...]
Full Mutation, Premutation or No Mutation At All
Robert Miller Executive Director National Fragile X Foundation Here in the Fragile X world we spend a lot of time parsing mutations, CGG repeat numbers and trying to define Fragile X. From a [...]
Helping Young Children With Fragile X At Home
UC Davis MIND Institute Teaching parents how to use an autism-based intervention with their child at home Funded by the National Fragile X Foundation Researchers at the UC Davis MIND Institute (David Hessl, Ph.D., [...]
Two New Grants Awarded to Study Behavior Intervention and the Premutation In Women
Dr. David Hessl of the UC Davis MIND Institute will be undertaking a project to extend autism behavioral intervention to young children with Fragile X syndrome. And Dr. Stephanie Sherman at Emory University is attempting to better understand the health consequences of the FMR1 premutation in women.
So Who Should I Vote For?
Here’s a question I often hear from families at election time: Which candidate(s) would be best for Fragile X? First of all, the NFXF is a non-profit, so we are by law (as well as [...]
New Clinical Trial for Adolescents and Adults with Fragile X Syndrome
Kennedy Krieger Institute Kennedy Krieger Institute is looking for adolescents and adults, ages 16 through 50 years, with Fragile X syndrome to participate in a research study. PURPOSE: The purpose of this study is [...]
Thankful for… Image Request
Thanksgiving is around the corner and we'd like to know what you are thankful for? Share your favorite family photo along with what your family is thankful for and we will be compiling these into [...]