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.
Restraint and Seclusion: Hear Our Stories (working title) is a powerful film by Dan Habib, filmmaker at the Institute on Disability at the University of New Hampshire. While everyone agrees that all students deserve to [...]
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 [...]
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 [...]
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 [...]
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 [...]
When a lab experiment is being done for the first time it often has to be done six or more times before everything is finally correct and it finally works reproducibly. That’s distressing and frustrating, but this is actually more the rule than the exception. For a clinical trial the stakes are so much higher. It's not just distressing and frustrating for the researchers, but it also causes real disruption and agony in the lives of real people who are a part of these trials. So when we don't "get it right" the first time everyone suffers.
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 [...]
At the IEP (transition) meeting prior to kindergarten: Bring a picture of your child to the meeting to let participants know you are talking about a real boy or girl and not just a name [...]
What is a virtual run/walk? A virtual run/walk is pretty simple. You sign up and we mail you the official T-shirt and race bib. Then you and everyone from everywhere choose your own date, time and place to do your running or walking in the month of July.
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 [...]