The NFXF Blog
White House Announces New Equal Employment Rule for Americans With Disabilities
Photo by Matt Wade. Courtesy of CC-BY-SA-3.0 Earlier this week, Vice President Joseph Biden announced a new rule that represents a historic advance for individuals with disabilities. By strengthening longstanding regulations under Section [...]
Mathias Fragile X Fundraiser, Rogers Neighborhood Family Fund and more!
Summer may be a time of R&R in the rest of the world, but our devoted Fragile X fundraisers always seem to use the warm months to heat up their engines and put their creative [...]
All Genes Are Not Created Equal
The gene and protein responsible for causing Fragile X syndrome emerges as a leading candidate in the search for the cause of autism and maybe even schizophrenia.
Fragile X Drug Developer SAGE Therapeutics Names New Chief Executive
New SAGE Therapeutics chief executive Jeffrey Jonas will oversee the company’s drug development program for Fragile X syndrome, which last month received a grant worth up to $10 million from the National Institutes of Health.
2013 NFXF Let 'Em Know 5k Results!
Awareness Begins…and just keeps on spreading and spreading…with YOU! Preparing for National Fragile X Awareness Month in July, we are reminded again of how awareness happens. One person, one fundraising lemonade stand, one parent’s chat [...]
Download: My State's Seclusion and Restraint Laws
Photo by Kate Tee harr. Courtesy of Flickr Creative Commons. The start of the school year is just around the corner—hold on now, breathe deeply, it's going to be OK! One of the [...]
Research: Language Development in Boys with Fragile X Syndrome
Waisman Center at the University of Wisconsin-Madison The Waisman Center at the University of Wisconsin-Madison is recruiting boys with Fragile X syndrome for a study on language development. Looking For Boys should be between [...]
Stanford: Help Explore the Ethical, Legal and Social Implications of New Prenatal Genetic Tests
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 [...]
2013 NFXF Let 'Em Know 5K Gallery
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 [...]
NIH Launches Neurological Drug Development Projects Including Fragile X Syndrome
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 [...]
What Do We Know About Cognitive Functioning in FXTAS?
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 [...]
My Child Won’t Answer Questions!
Direct questions are typically the way we try to engage people in conversation. For children with FXS, we need to learn other strategies. It is critical to understand why it is so difficult for children with FXS to understand and respond to these questions, before we get to the how of getting answers.