The NFXF Blog
Walking, Running, and Hiking for a Cause! And the 2012 Annual Report!
Focus on Fundraisers If you haven’t heard by now, we are hosting our first annual “Let ‘Em Know Virtual 5k Run/Walk for Fragile X” in honor of National Fragile X Awareness month in July! Thanks [...]
Research: MIND Institute Cognitive Training for Fragile X Syndrome
UC Davis MIND Institute Cognitive Training for Fragile X Syndrome We are conducting a study to determine if a computer-based and game-oriented training program will enhance the working memory skills of children and adolescents [...]
A Bump in the Drug Therapy Road: What Can Advocates Do?
Note: Just before I wrote this article, a group of parents that Margaret Mead could have easily been describing when she penned her most famous quote ("Never doubt that a small group of committed people [...]
Stanford Study on Problem Behaviors in Adolescents with Fragile X
Stanford School of Medicine The Center for Interdisciplinary Brain Sciences Research (CIBSR) at Stanford University would like to invite you to take part in an exciting new research opportunity available to families who have [...]
Study on Spoken Language in Children, Adolescents, and Young Adults with Fragile X Syndrome
MIND Institute University of California, Davis If you have a son or daughter with Fragile X syndrome between 6 and 23 years of age, you and your child are invited to participate in a [...]
Ongoing Studies at the Fragile X Treatment Research Program at Vanderbilt University
Fragile X Treatment Research Program at Vanderbilt University Dear Member of the Fragile X Community, We are contacting you to let you know about a research program at Vanderbilt University. This program studies new [...]
NY Times : An Experimental Drug’s Bitter End
Photo by Daniel Acker for the New York Times On the front page of the Business section of the June 7 New York Times was an article regarding Seaside Therapeutics' ending of the [...]
LINKing Up for Summer Social Events!
Central CA FX Links Group enjoys its first event! Summer is almost here and our LINKS groups are in full swing with lots of summer activities! The events calendar has been filling up [...]
Behavior Modification in the Classroom
Watching a student with FXS struggle is difficult when their behavior is affected by those characteristics that make up the Fragile X phenotype.
NFXF Let 'Em Know 5K
Virtual Run/Walk for Fragile X Our mission: To raise awareness about Fragile X! We need your help to “Let ’Em Know” and make that happen! This isn’t about how fast or slow you are, instead [...]
An Update from Seaside 5/22
Yesterday we received the following messages from Paul Wang, Vice President, Clinical & Medical Affairs at Seaside Therapeutics, Inc. Dear all - I wanted to let you know about a letter that we just posted [...]
Open Letter to the FX Community about Seaside Arbaclofen (STX209)
To our Fragile X family: Many of you by now have heard the news that Seaside Therapeutics has decided to end their extension of the trial medication known as Arbaclofen (STX209). The NFXF Board of [...]