The NFXF Blog
Researchers Need Your Help for New Targeted Treatment for Fragile X Syndrome
Seaside Therapeutics Seaside Therapeutics is working to deliver drug treatments that address the underlying causes of developmental disorders like Fragile X syndrome. Right now, Seaside is testing an investigational medicine for people [...]
Online Survey: Usage of Tablet App Technology by Individuals with Fragile X Syndrome
Laurie Yankowitz, EdD, and Vicki Sudhalter, PhD Has app technology made a qualitative difference for your affected family member? Please help us share valuable information about use of app technology by individuals with Fragile [...]
Pictures of Fragile X Fathers
Father's day is right around the corner and we're working on a tribute to some of the amazing Fragile X Dads out there. We would like you to share some pictures of your dad or [...]
Study Recruitment: When Do Seizures Occur in People with Epilepsy and Intellectual Disabilities?
University of Cambridge (UK) Researchers from the University of Cambridge (UK) are carrying out an online survey about situations that might increase or decrease the chances of children/adults with epilepsy and intellectual disability having [...]
Rep. Harper: Restraint Guidelines Endanger Children
Rep. Gregg Harper Special to Roll Call May 14, 2012, Midnight Every day in schools across the United States, students are being subjected to barbaric and potentially deadly treatment in the form of seclusion [...]
National Institutes of Health (NIH) Research Plan for FXS and Associated Disorders Meeting
NFXF Executive Director Robert Miller, parent and NFXF Director of Public Policy and Government Affairs Jeffrey Cohen and parent Tamaro Hudson just returned from a two-day meeting in Washington, DC where they helped update the [...]
Questions & Answers About Clinical Trials
Our latest podcast features Robert Miller of the National Fragile X Foundation and representatives of the the major pharmaceutical companies involved in ongoing Fragile X Clinical Trials. We have Dr. Paul Wang, Vice President, Clinical Development of [...]
A Mother's Touch!
We hope everyone has a wonderful Mother's Day today. We'd like thank everyone who participated in our calls for submissions. It is an honor to serve families with such dedicated mothers! [youtube]http://www.youtube.com/watch?v=3xYpcP86hNU[/youtube]
New Hotel Reservation Information!
As of the first week of May, the NFXF room block at the InterContinental Miami has been SOLD OUT! For your convenience, we have contracted another block of rooms at the same great rate [...]
Fragile X Mentioned in Newsweek Magazine
The National Fragile X Foundation is pleased to see a mention of Fragile X syndrome in Newsweek in an article on special needs called "When Love is Not Enough". The article contains 4 paragraphs about [...]
A Quick Weekend Update
Robert Miller Executive Director National Fragile X Foundation This past weekend I spent three days in Miami for the Annual Meeting of the Board of Directors. The board renewed its dedication and commitment [...]
What's Happening at the Conference?
Make sure your sails are set for due course to Miami this summer! Ahoy! Check out the eXciting speakers and presentations line up. Anchor your hotel reservations today. Buoy your bank account (save $$) by [...]