The NFXF Blog
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 [...]
Seaside Therapeutics Comments on News Report of “Failed” Autism Drug Trial
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 in MD Looking for Children 5-13 with Fragile X Syndrome
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 [...]
Sertraline Study for 24-60 Month Old Children 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 [...]
Proclaiming Fragile X Awareness Day At Home Plate in Fenway Park
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
How to Encourage Play — and Why Itʼs So Critical for Your Child
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.
The Fruits of Your Labor: Letter to the Appropriators signed by Senators
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 [...]
Major Capitol Hill Publication Runs Opinion Article on Fragile X Syndrome-Autism Links
Reps. Harper & Engel Cite New Research Breakthroughs; to Host Congressional Roundtable on May 17th The article which appears below ran in yesterday’s Roll Call newspaper, which is delivered to all congressional offices and widely available on [...]