The NFXF Blog
Report on the 1st International Conference on the FMR1 Premutation
Basic Mechanisms and Clinical Involvement The NFXF was one of multiple co-sponsors of this important gathering organized by Drs. Flora Tassone and Paul Hagerman of the UC Davis School of Medicine and MIND Institute. Executive [...]
The STX209 Saga and Beyond—What We’ve Done, What We’re Doing and What’s the Plan
(c) Photo: Laura Gilmore For more than 10 years the NFXF has been participating in the life-sized chess game that is the federal budget. Even before the decision was made to bring [...]
Let's Talk Medication For Fragile X Syndrome
Given the great number of medications in the market that address specific issues with fragile X syndrome, the world of treatment can be tough for parents and other caregivers to navigate. One of the most frequent questions they ask is, "Which medication is best for my child?" The National Fragile X Foundation is pleased to address this topic in the first of its series of "Let's Talk" webinars. "Let's Talk Medication for Fragile X Syndrome" features Dr. Craig Erickson, a noted Fragile X expert and medical director of the Fragile X Clinic in Cincinnati, Ohio.
What Defines a Carrier?
Why is there so much variability among male and female Fragile X carriers? There are a number of factors involved. Because the Fragile X gene is X-linked, gender plays a big role in determining who might show symptoms. Male premutation carriers, because they have only one X chromosome, are much more commonly affected by FXTAS than are female carriers.
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 [...]