A multi-center, phase II randomized, double-blind placebo-controlled parallel-group flexible-dose forced-titration study that will use a novel design to address the impact of AFQ056 on language learning in 3- to 6-year-old children with FXS.
With a number of colleagues from the UC Davis MIND Institute in California, including Dr. Randi Hagerman, and colleagues from the Asociación X Frágil Colombia, I just completed a 10-day trip throughout Colombia including Cali, Medellin, Bogota, Buqa and Ricaurte (the small, isolated rural town with ten times the typical prevalence of Fragile X). Our work involved numerous talks at medical centers and well-over 75 meetings with individual families.
The Waisman Center at the University of Wisconsin-Madison is recruiting boys with fragile X syndrome and autism spectrum disorder for a study on language and communication skills and Magnetic Resonance Imaging (MRI). The purpose of this research is to better understand how children with fragile X and children with ASD use language. All of the testing is done at the Waisman Center, and can be scheduled at your convenience.
You may be eligible if you have Fragile X syndrome and have had at least one seizure OR if you are a male with Fragile X syndrome who is 17 years or older and have never had a seizure.
The Waisman Center at the University of Wisconsin-Madison has an open position in the Post-Doctoral Training Program in Intellectual and Developmental Disabilities Research. This program has been supported continuously by NICHD since its inception in 1995, and over 95% of former trainees have obtained faculty and/or research positions relevant to IDD. The majority have successfully received extramural research funding.
The University of Colorado and Children's Hospital Colorado is conducting a research study to learn more about the guardianship experience of individuals with Fragile X Syndrome. We are currently looking for survey participants.
The purpose of this study is to improve our understanding of how differences in brain activity affect learning, language, and behavior in children with Fragile X Syndrome.
The Rocket study will help determine if an investigational medicine, called OV101 or gaboxadol, is safe and effective in treating behavioral characteristics commonly present in people with Fragile X syndrome.
As I watched the new U.S. House of Representatives be sworn in today and elect Rep. Nancy Pelosi as its new Speaker, I was reminded, again, that we are fortunate to live in a country where we can change control in Washington in the voting booth, not with tanks in the street. And when change happens, it is peaceful outside the Capital and collegial inside.
The NFXF Western Massachusetts Chapter’s eighth annual Cork and Café Fundraiser hosted 55 wine lovers for an evening of wine tasting, appetizers, a silent auction, and for the non-wine drinkers, hand-roasted coffees.