The NFXF Blog
Jeffrey Cohen to Lead World’s Leading Authority on Fragile X
FOR IMMEDIATE RELEASE Ted Coutilish (734) 320-7981 tcoutilish@fragilex.org www.fragilex.org (Walnut Creek, CA, October 12, 2013) The National Fragile X Foundation Board of Directors has named Jeffrey Cohen as interim executive director. “We are fortunate Jeff [...]
European Fragile X Awareness Day
Dr. Jörg Richstein, Chairman of the Fragile X support group in Germany, stopped by our office to say hello just a few weeks ago! Today, we recognize our friends and partners [...]
FDA Approves New Drug Trial for Fragile X Syndrome
Neuren Pharmaceuticals (NEU) has received approval from the US Food and Drug Administration to conduct a Phase 2 clinical trial of a drug to treat patients with Fragile X syndrome (FXS), the company recently announced. [...]
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.