The NFXF Blog
Across my Desk: Females and FXTAS
Liane Abrams, MS, CGC Each day I receive calls and emails from parents, relatives and individuals affected by Fragile X-associated Disorders. Many of the emails and calls include questions about FXTAS (Fragile X-associated tremor ataxia [...]
International Fragile X Conference Updates
Curious about what's going to be at the conference? Here are a few highlights: Keynote presentations by Elizabeth Berry-Kravis MD PhD, Kim Huber PhD, , Stephen Warren PhD, and Rick Guidotti of Positive Exposure [...]
How To Choose an App
Sarah "Mouse" Scharfenaker There are millions of great apps out there. Here are some guidelines as to how to pick 'em. What is your goal in using a specific app? Reinforcing/practicing concepts from therapies? Keep [...]
A Forward Trajectory
From the Executive Director Robert Miller Advocacy Day is over – but our Public Policy effort continues: Twenty-three of the twenty-five Fragile X clinics have met – but the work of the Fragile X Clinical [...]
Seaside Therapeutics Announces Issuance of Key Patent for Lead Autism/FXS Candidate STX209
New Patent Complements STX209 Orphan Drug Designation for Fragile X Syndrome CAMBRIDGE, Mass., Mar 27, 2012 (BUSINESS WIRE) -- Seaside Therapeutics, Inc. announced today that the United States Patent and Trademark Office (USPTO) has [...]
On the Murder of George Hodgins
Robert Miller Executive Director National Fragile X Foundation Dear Friends in the Fragile X Community, On March 6th, 2011 George Hodgins, a 22-year old autistic man living in Sunnyvale, California, was murdered by [...]
Investigational Drug Study for Children with Fragile X Syndrome – Baltimore
Kennedy Krieger Institute Kennedy Krieger Institute is looking for children, ages 5 through 11 years, with Fragile X syndrome to participate in a research study. The purpose of this study is to determine if [...]
Does Your Adolescent or Young Adult Have Fragile X Syndrome?
Stanford New Stanford Treatment Study Focused on Fragile X Syndrome Adolescents and Young Adults with Fragile X Syndrome Age 12-29 Years Needed We are recruiting females and males between the ages of 12 and [...]
Meeting of the Fragile X Clinical & Research Consortium
Robert Miller National Fragile X Foundation Member of the FXCRC Steering Committee I recently returned from a meeting of the Fragile X Clinical & Research Consortium in Houston where my NFXF colleagues Sharon [...]
Public Policy Is for People!
"Public Policy Is for People!" reflects a fundamental truth about the legislative advocacy efforts we pursue at the National Fragile X Foundation. Yes, "public policy" may sound like a forgettable chapter in your high school [...]
URGENT: National Institutes of Health call for Update to Fragile X Research Plan
The NIH has extended the deadline to March 16, 2012. The National Institutes of Health (NIH) has asked the National Fragile X Foundation to help organize feedback regarding the aims and future direction of [...]
Does Your Child Need Help to Improve His/Her Math Skills?
Stanford University Standford University Research Individuals with Fragile X Syndrome Age 9-23 Years Needed We are conducting a behavioral treatment study utilizing a fun, reward-based learning paradigm to maximize your child’s learning potential. Participation [...]