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.
Watching a student with FXS struggle is difficult when their behavior is affected by those characteristics that make up the Fragile X phenotype.
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 [...]
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 [...]
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 [...]
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 [...]
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.
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.
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.
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 [...]
After the International Meeting for Autism Research in Spain, the news organization Reuters published an article titled “Key trial of Seaside autism drug fails to show benefit.” In order to provide context and help the [...]
Kennedy Krieger Institute Got Fragile X? Participate in a New Clinical Trial for Children with Fragile X Syndrome! Kennedy Krieger Institute is looking for children, ages 5 through 13 years, with Fragile X syndrome [...]
UC Davis MIND Institute Sertraline Study - Clinical Trials We are actively recruiting children diagnosed with FXS between 24-60 months old to participate in a groundbreaking study! We have preliminary evidence that sertraline, a [...]
Tuesday, April 23 was a proud day for Fragile X. That’s when Denise Devine of the Fragile X Resource Center of Western Massachusetts and my husband, Eric Welin, of the Fragile X LINKS Group of Eastern Massachusetts, stepped onto the field at Fenway Park in Boston, accompanied by our son, Caleb. They stood together behind home plate
One of the common sites we encounter when visiting a child's home is a play area chock-full of every toy known to man, yet they won’t play with any of them. This exasperation is likely familiar to many of you.
On Fragile X Advocacy Day, nearly 200 FX advocates braved the "Snowstorm That Wasn't" and asked their Members of Congress to sign letters to appropriators that were circulating from Senators Stabenow and Isakson and Representatives [...]