The NFXF Blog
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!
The 2014 NFXF Let ‘Em Know 5k: It’s Back!
Last year, we held our first ever “Let ‘Em Know 5k”, a virtual event that brought together people from all over the country! This July, we want it to be even bigger and better. So [...]
How My Son Finally Opened Up About His Little Brother With Special Needs
Leah Sugarman, a Fragile X mom and an active member of the Eastern Massachusetts Fragile X CSN group, shares her story about the first time her son opened up about his little brother with special needs…
More Than a Case of Fragile X
Colleen McGavin, a student at the University of Michigan Medical School, explains to the medical community that her brother with Fragile X is not just "a case of Fragile X" but a "beautiful, complex, vulnerable, [...]
NFXF Founder Receives Distinguished Scholarly Public Service Award
"I can think of no one more deserving of this honor. Although a physician and scientist, Randi is a public servant in the true sense of the title. Her passion to bring positive change to the lives of individuals and families impacted by Fragile X and autism sets the bar. We at the National Fragile X Foundation are proud to carry on the work that Randi started 30 years ago when she established the NFXF. The families we serve sleep better at night knowing that Randi is on the job. We offer our most heartfelt congratulations and thanks to Randi on the occasion of this well deserved award." said Jeffrey Cohen, NFXF interim executive director.