The NFXF Blog
Charity Navigator Awards NFXF With a 4-Star Rating
We are proud to announce that Charity Navigator has awarded us the prestigious rating of 4 Stars. That's the highest possible rating from America's Largest Charity Evaluator. The goal of the Charity Navigator is to [...]
Fragile X and the NFXF, Courtesy of the Giving Library
I'm very excited to share this short video I recorded recently thanks to the generosity of our friends at the Giving Library. In it, I talk about how Fragile X affects our lives and the ways the National Fragile X Foundation has helped make a world of difference to many families, including mine. I hope you'll take the time to watch it and share it with your family and friends.
NIH Funds Expansion of Research on iPad-Assisted Language Development
Photo courtesy of Autism Speaks The National Institutes of Health has awarded a major grant to conduct a clinical trial on iPad Assisted Language Development. An Autism Speaks funded study reported encouraging findings on [...]
When “Marriage” Is Spelled F-X-T-A-S
My whole marriage to my husband Vince can be described by one acronym: FXTAS. Our wedding was in April 1999. It was a second marriage for us both, and we weren’t youngsters (I was 48 and Vince was 64), but I thought we were both healthy. We had no inkling that Vince’s mind was already deteriorating from FXTAS.
Research: Roche is seeking participants for the Fragxis and FoXtail studies
Roche We are studying an experimental medication for Fragile X syndrome in children and adolescents. We hope to learn if this experimental medication is safe, how well your body manages the medication (tolerability), how [...]
Massachusetts Ends Sheltered Workshops, Sets Promising Model
Blueprint for Success sets the new mission statement for Massachusetts' Employment for Individuals with Disabilities As part of the Collaboration to Promote Self-Determination, one of the issues that we at the NFXF have [...]
UNC Child Neurologist Finds Potential Route to Better Treatments for Fragile X, Autism
Contact: Mark Derewicz mark.derewicz@unch.unc.edu (919) 923-0959 University of North Carolina Health Care CHAPEL HILL, N.C. – When you experience something, neurons in the brain send chemical signals called neurotransmitters across synapses to receptors on other [...]
UMass Medical School: Genetic Mutation Found to Restore Translational Balance in Mice with FXS Mutation
Joel Richter, PhD, professor of molecular medicine(Photo Courtesy of UMassMedNow) Scientists at UMass Medical School have shown that knocking out a gene important for messenger RNA (mRNA) translation in neurons restores memory deficits [...]
A Fragile X Question on Jeopardy!
Yes, that's correct Fragile X syndrome was mentioned when Mike asked for "Fragile for $400" on Thursday nights episode of Jeopardy. http://youtu.be/Ujr5jhZgzvY
The 3rd Annual Walk for Faces of Fragile X
“The walk just keeps getting bigger and better every year!” This was a comment made by the mom in one of our families who drives more than three hours to attend the Walk for Faces of Fragile X in Kansas. She was particularly excited this year because her brother and his family joined them at the walk. That’s what it’s all about: families and their communities coming together to raise awareness, foster acceptance and see that we are not alone on this sometimes daunting journey.
Xpressing Gratitude! We Need Your Videos!
The NFXF is always hard at work doing everything we can to help the Fragile X community. You know that and we do, too! But do you know who's really making this all happen? That’s [...]
Colorado Children's Hospital "Foxtail" study
Colorado Children's Hospital We invite your child with Fragile X syndrome to join in the foXtail study This invitation tells you a more about the study We want to see if a new medication, [...]