Best Sister in the World

By |2014-05-27T15:08:42-04:00May 27, 2014|Hope & Inspiration|

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

By |2014-05-23T11:18:30-04:00May 23, 2014|Hope & Inspiration|

“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

By |2014-05-21T11:22:36-04:00May 21, 2014|Opportunities for Families|

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

By |2014-05-20T12:50:30-04:00May 20, 2014|In the News|

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!

More Than a Case of Fragile X

By |2014-05-08T11:58:58-04:00May 8, 2014|In the News|

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

By |2014-05-01T12:25:32-04:00May 1, 2014|FXCRC and Clinics, Keeping You Informed|

"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.