The NFXF Blog
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 [...]
Clinical Trials for Arbaclofen at Kennedy Krieger Institute
Kennedy Krieger Institute Dear Families and Friends, We would like to invite you to participate in a research study at Kennedy Krieger Institute in Baltimore, Maryland. The research study will determine if an investigational [...]
Cholesterol Drug May Treat Fragile X Syndrome
The investigator cited in this article, Dr. Emily Osterweill, was previously funded by the National Fragile X Foundation for her work on mGluR5. -- Cholesterol drug may treat Fragile X syndrome -- A cholesterol-lowering drug called lovastatin prevents seizures in mice that model Fragile X syndrome, according to a poster presented Sunday at the 2012 Society for Neuroscience annual meeting in New Orleans.
Visit Great Country Farms in Virginia, November 10, 2012
Date: Saturday, November 10, 2012 Time: 1:00 PM - 4:00 PM Location: Great Country Farms 18780 Foggy Bottom Road Bluemont, VA 20135 Hosted by: Cost: Special price of $8 Details This is a [...]
Infants with FMR1 Premutation or Fragile X Syndrome
The University of South Carolina’s Neurodevelopmental Disorders Lab is currently recruiting families with infants 10 months and younger who have been diagnosed with the FMR1 premutation or full mutation Fragile X. We are interested in learning about the early development of infants who are at risk for developmental delay to promote early diagnosis and treatment for these children and their families.