The NFXF Blog
Ongoing Studies at the Fragile X Treatment Research Program at Vanderbilt University
Fragile X Treatment Research Program at Vanderbilt University Dear Member of the Fragile X Community, We are contacting you to let you know about a research program at Vanderbilt University. This program studies new [...]
NY Times : An Experimental Drug’s Bitter End
Photo by Daniel Acker for the New York Times On the front page of the Business section of the June 7 New York Times was an article regarding Seaside Therapeutics' ending of the [...]
LINKing Up for Summer Social Events!
Central CA FX Links Group enjoys its first event! Summer is almost here and our LINKS groups are in full swing with lots of summer activities! The events calendar has been filling up [...]
Behavior Modification in the Classroom
Watching a student with FXS struggle is difficult when their behavior is affected by those characteristics that make up the Fragile X phenotype.
NFXF Let 'Em Know 5K
Virtual Run/Walk for Fragile X Our mission: To raise awareness about Fragile X! We need your help to “Let ’Em Know” and make that happen! This isn’t about how fast or slow you are, instead [...]
An Update from Seaside 5/22
Yesterday we received the following messages from Paul Wang, Vice President, Clinical & Medical Affairs at Seaside Therapeutics, Inc. Dear all - I wanted to let you know about a letter that we just posted [...]
Open Letter to the FX Community about Seaside Arbaclofen (STX209)
To our Fragile X family: Many of you by now have heard the news that Seaside Therapeutics has decided to end their extension of the trial medication known as Arbaclofen (STX209). The NFXF Board of [...]
Seaside Therapeutics Announces End of Arbaclofen (STX209) Extension Study
Late yesterday afternoon the NFXF, along with all of the study locations, was contacted by Seaside Therapeutics and informed that the “Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of [...]
Advocacy From Home: How to Establish Fragile X Awareness Day
We often hear from parents who say they really wish they could do more for Fragile X awareness but cannot due to lack of time, money or childcare. So we are here to say there are multiple ways to get involved and spread awareness right from your own home. One terrific way is to establish a Fragile X Awareness Day in your state. It may sound intimidating but the process is not really a difficult one.
Invite Your Members of Congress to a Fragile X Roundtable Discussion
On May 17th, Representatives Gregg Harper and Eliot Engel will be hosting a Roundtable discussion on Fragile X and autism for members of Congress and their staff. Please send an email today to invite your Members of Congress to this important event.
A 10-Year Roaring Success for Central IL LINKS Group’s Annual Walk!
Ten years ago, Andrea (Schnarr) Wronkiewicz approached me about hosting a Walk for Fragile X in honor of my children—Parker and Allison—as her senior high school class project. That first walk brought together 150 people and raised $5,500. Our group—the Central IL Fragile X Group, with my co-leader Amy Zeleznik—partnered with Andrea again on Saturday, April 20, to host the 10th Annual Walk for Fragile X in Canton, IL.
Help shape federal agency strategies for youth and young adults with disabilities
Join the Conversation for Change: Help shape federal agency strategies for helping youth and young adults with disabilities successfully transition from school to work Overview To examine the impact of existing federal regulations and legislation [...]