A message from the Jeffrey Cohen, NFXF interim executive director. >> I recently attended a meeting focusing on "The Future of Fragile X Public Health Research.” One of the hot topics was how the collection of public health data can improve how we measure success in clinical trials results....
New York State Institute for Basic Research (IBR) and the Fragile X Clinical and Research Consortium (FXCRC) Continue To Make Great Strides with the CDC supported Fragile X Online Registry With Accessible Research Database (FORWARD) [...]
"I can think of no one more deserving of this honor. Although a physician and scientist, Randi is a public servant in the true sense of the title. Her passion to bring positive change to the lives of individuals and families impacted by Fragile X and autism sets the bar. We at the National Fragile X Foundation are proud to carry on the work that Randi started 30 years ago when she established the NFXF. The families we serve sleep better at night knowing that Randi is on the job. We offer our most heartfelt congratulations and thanks to Randi on the occasion of this well deserved award." said Jeffrey Cohen, NFXF interim executive director.
The bipartisan “Gabriella Miller Kids First Research Act”—a bill authored by U.S. Rep. Gregg Harper with co-authors U.S. Reps. Peter Welch and Tom Cole—is heading to the president’s desk. The bill funds pediatric medical research [...]
Congratulations to the UC Davis MIND Institute—a member of the Fragile X Clinical & Research Consortium— for being named an Intellectual and Developmental Disabilities Research Center. Only a handful of neurodevelopmental centers hold that distinction, and we’re proud to call them our friends and colleagues in the Fragile X community.
It’s a breakthrough in understanding the process, but it is not yet a breakthrough for treating the condition. A new study led by Weill Cornell Medical College scientists shows that the most common genetic form [...]
I'm very excited to share this short video I recorded recently thanks to the generosity of our friends at the Giving Library. In it, I talk about how Fragile X affects our lives and the ways the National Fragile X Foundation has helped make a world of difference to many families, including mine. I hope you'll take the time to watch it and share it with your family and friends.
Meet Jeffrey Cohen, new interim executive director of the National Fragile X Foundation. Cohen, who succeeds Robby Miller, has a long association with the Foundation. He joined the NFXF Board of Directors in 1996 and [...]
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 [...]
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 [...]
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 [...]
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 [...]
Yesterday we received the following messages from Paul Wang, Vice President, Clinical & Medical Affairs at Seaside Therapeutics, Inc. Dear all - I wanted to let you know about a letter that we just posted [...]
Late yesterday afternoon the NFXF, along with all of the study locations, was contacted by Seaside Therapeutics and informed that the “Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of [...]
After the International Meeting for Autism Research in Spain, the news organization Reuters published an article titled “Key trial of Seaside autism drug fails to show benefit.” In order to provide context and help the [...]
