The NFXF Blog
Xpressing Gratitude! We Need Your Videos!
The NFXF is always hard at work doing everything we can to help the Fragile X community. You know that and we do, too! But do you know who's really making this all happen? That’s [...]
Colorado Children's Hospital "Foxtail" study
Colorado Children's Hospital We invite your child with Fragile X syndrome to join in the foXtail study This invitation tells you a more about the study We want to see if a new medication, [...]
Sertraline Study – Clinical Trials at UC Davis MIND Institute
UC Davis MIND Institute We are actively recruiting children diagnosed with FXS between 24-60 months old to participate in a groundbreaking study! We have preliminary evidence that sertraline, a selective serotonin re-uptake inhibitor (SSRI) [...]
University of Louisville Looking for Adolescents Between Age of 14-17 With FXS
Kosair Charities Pediatric Clinical Research Unit at the University of Louisville The Kosair Charities Pediatric Clinical Research Unit at the University of Louisville invites adolescents between the ages of 14 and 17 with Fragile [...]
Honor Robby Miller with Your Thoughts
The NFXF Board of Directors accepted the resignation of Robby Miller at its regular board meeting in Detroit on October 12, 2013. Miller will continue to work at the Foundation through December 31, 2013. Have [...]
Moving Forward: Meet the NFXF's Interim Executive Director
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 [...]
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 & [...]