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 [...]
A Mom's Introduction to Advocacy Day
The following is a personal blog post written by Melissa Welin, Co-Founder of the Fragile X LINKS Group of Eastern Massachusetts giving an introduction to Advocacy Day through the eyes of a first time advocate. [...]
Start Planning Your 2012 Fundraiser Today!
With the bustle of the holiday season behind us, now is the perfect time to start planning a 2012 fundraiser! The NFXF relies on support from small events, and we look forward to assisting new [...]
(Fragile) X Marks a Life-Changing Spot
Source: Department of Defense: Congressionally Directed Medical Research Programs Andrew Selinger The dream of every parent is for each of their children to be happy and healthy. For Andrew Selinger, that dream is bittersweet. His [...]
How Do You Say I Love You?
We have a special little project just around the corner and need your help! We all show and say I love you in many different ways - We want to see how you and your [...]
Welcome to Your New National Fragile X Foundation Website!
We know from years of feedback that the website serves as a useful and important resource for many newly diagnosed individuals and families as well as longtime members of the Fragile X community. Early in [...]