Fragile X got Talent
Calling all performers with Fragile X: Let’s spice things up in Miami and have some fun with a homegrown Fragile X Talent Show! Do you (or your loved one) sing, play an instrument, dance, act, [...]
Meet our new Development Manager: Julie Stutzman
Julie Stutzman is the new Development Manager at the National Fragile X Foundation. If you have any questions regarding fundraisers or grants which benefit the Foundation, you can reach Julie at fundraisers@fragilex.org. I am thrilled [...]
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 [...]
Help Us Keep Fragile X in the Federal Budget! (Deadline March 20th)
It's been one week since Fragile X Advocacy Day 2012, and we need your help—right now! (Even if you didn’t participate in Advocacy Day.) The more people who help, the better it will be for [...]
Advocacy Day 2012 Wrap Up
Thanks to everyone who participated in Fragile X Advocacy Day 2012. It is now one for the books, as they say, but our work is by no means finished. More than 150 advocates registered and [...]
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 [...]