The NFXF Blog
St. Louis' Annual Mouse Races
There is something to be said about unique thinking, especially when fundraising can be so challenging. Creating a signature event in your community takes time, patience and creativity. Thankfully, our group leaders have all of those qualities, including the Fragile X Resource Center of Missouri who just held their 8th Annual Mouse Races. Yes, you read that correctly: mouse races!
FXCRC Clinic Visit Evaluation Survey
The National Fragile X Foundation (NFXF) and the are pleased to share the new online Clinic Visit Evaluation with those who have visited one of the clinics in the consortium. The evaluation [...]
Study Shows Professionals Still Have Much to Learn About Fragile X
A recent study by Brenda Finucane of the Geisinger Health System and her colleagues reveals that many educators and therapists still know little about Fragile X syndrome (FXS). Brenda Finucane is an NFXF Scientific & [...]
The Gang’s All Here! The NFXF Team Retreat.
The Team discusses plans for the future. As the NFXF grows, the foundation’s team members have become spread out coast-to-coast, California to Massachusetts. So we love it when once a year we have [...]
Sitio de CDC de Síndrome de X frágil ahora en español | CDC Fragile X Syndrome Site Now in Spanish
http://www.cdc.gov/ncbddd/spanish/fxs/index.html Los Centros para el Control y la Prevención de Enfermedades (CDC, por sus siglas en inglés) ha traducido en español su página web sobre el Síndrome X Frágil. El sitio es igual [...]
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 [...]