The NFXF Blog
The Many Ways You Raise Fragile X Awareness—Every Day!
Every day when you walk out the door with your child who has Fragile X syndrome (FXS), you are raising awareness of the condition. It happens in a variety of ways, and what is so [...]
Fragile X Infographic
We've put together a special infographic that you can share with your friends to in turn share with their friends and family. It shows the many ways Fragile X can affect impact a family. We hope it helps you continue to spread awareness!
Our Top Let 'Em Know Virtual 5K Fundraisers So Far!
UPDATE: Just as we were about to publish this article, we were pleased to learn that NFXF Board Member Dave Justus and his wife Joy will match another $10K in Let 'Em Know 5K donations [...]
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 [...]