The NFXF Blog
Spread the Word to End the Word
In Girl Scouts, there are three different awards you can receive, Bronze, Silver, and Gold. As a member of Girl Scouting, I have received all three awards. The one I feel most proud of is my Gold Award because what I did to earn that award made a real difference to my brother and to my community. I received that award because I organized a “Spread the Word to End the Word” day at my high school, Hopkins Academy.
Parent Survey Results: Insights To Appear in Research Grant
A few months ago we asked the parents of children and adult offspring with Fragile X syndrome (FXS) in the National Fragile X Foundation (NFXF) community to answer a few questions. We asked what parents [...]
Novartis Trial and the Morgan Family Heartbreak
As I contemplated the end of the I decided to list the accomplishments and changes that we have witnessed in our son, Dan, since its inception two years and nine months ago. The [...]
Continued Success of the FORWARD Project
New York State Institute for Basic Research (IBR) and the Fragile X Clinical and Research Consortium (FXCRC) Continue To Make Great Strides with the CDC supported Fragile X Online Registry With Accessible Research Database (FORWARD) [...]
Insight on Evidence-based Medical and Therapeutic Intervention
A discussion for parents of children with special developmental needs about evidence, consensus and anecdotal-based interventions.
Survey: The Quality of Life for Children with FXS
Please help the NFXF and the Fragile X clinics gather information about the quality of life for children with Fragile X syndrome (FXS) and their parents across the country. One of the ways of finding [...]
Does CGG Repeat Length Relate to Psychological Symptoms?
A new study reveals that increasing CGG repeat length in the premutation range (55–200 repeats) doesn’t necessarily put one at increasing risk of psychiatric disorders — the relationship is more complex.
Let 'Em Know 5k FAQs
Registration & Rules What is the Difference Between Registering, Joining a Team and Donating? Registering When you register for the NFXF Let ‘Em Know 5k, you: Receive a dry-fit shirt and a race bib. Agree [...]
Best Sister in the World
One of the many things I wasn’t ready for as a parent — and then again as a special needs parent — is how true the clichés are. I’ve lost track of how many people tell me about studies that say growing up with a special needs sibling will make my other children kinder, more sensitive, and all around more wonderful people. I think it’s probably true but that doesn’t help get us through the day. Although there are moments.
Our Road to Independence
“How in the world will we raise our developmentally disabled kids that get so overwhelmed by almost everything? Will they have to live with us forever? Will life ever calm down? Will they ever be [...]
Alcobra Ltd Announces a New Clinical Trial Enrolling Subjects with Fragile X Syndrome in 2014
Alcobra Ltd will be conducting a clinical trial of Metadoxine Extended Release (MDX) in adults and adolescents, 15 to 55 years old, with Fragile X syndrome. The planned Phase IIb MDX clinical trial will be a multi-center, randomized, placebo-controlled study, conducted primarily in the US. The study is supported by positive data collected from multiple earlier animal studies using metadoxine. Results from these studies demonstrated significant improvement in behavioral and cognitive outcomes in mice based on testing and performance of memory, learning, and social interaction.
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!