The NFXF Blog
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.
Are You a Parent or Caregiver to a Child with Fragile X Syndrome?
The University of Newcastle, Australia is interested in your experiences regarding the diagnosis of your child. We are also looking at how you told your child/ren about their condition, and how they reacted. If you have not yet told your child, we are interested in what your concerns are around telling them about the syndrome.
Your Vote Matters in the Fragile X World
Jeffrey Cohen Director of Government Affairs & Advocacy In case you hadn’t noticed there’s a big election coming up. The upcoming presidential election is sure to have an impact on our country, your locale [...]
Communicating Through Behavior
Source: , Summer 2003 Marcia Braden, PhD As I was pondering what to write about it occurred to me just how adept people with Fragile X syndrome are at telling us what they need [...]