Stanford Center for Integration of Research on Genetics and Ethics HELP EXPLORE THE ETHICAL, LEGAL AND SOCIAL IMPLICATIONS OF NEW PRENATAL GENETIC TESTS WITH THE STANFORD UNIVERSITY FORUM ON BIOMEDICAL ETHICS The INVEST forum [...]
As National Fragile X Awareness Month for 2013 winds down, we want to thank everyone for making our first NFXF Let 'Em Know Virtual 5K a resounding success! With your help getting the word out [...]
The National Institutes of Health (NIH) has launched three projects that will focus on development of therapeutics, including one project for Fragile X syndrome. "We are excited about the opportunity to apply cutting-edge science to [...]
Since its identification less than a decade ago, researchers have learned a good deal about Fragile X-associated tremor/ataxia syndrome (FXTAS). Not surprisingly, each advance has raised a set of new questions. Progress seems to [...]
Video clip from local news station covering a family who participated in a study that later ended and they want to get their hands on the drug that they called a miracle drug.
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 [...]
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!
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 [...]
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 [...]
(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 [...]
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.
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.
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 [...]
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 [...]
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 [...]
