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.
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 [...]
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 [...]
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 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 [...]
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.
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 [...]
