(c) Photo: Laura Gilmore For more than 10 years the NFXF has been participating in the life-sized chess game that is the federal budget. Even before the decision was made to bring [...]
Note: Just before I wrote this article, a group of parents that Margaret Mead could have easily been describing when she penned her most famous quote ("Never doubt that a small group of committed people [...]
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 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 [...]
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 [...]
The UC Davis MIND Institute reported on its website that a $3 million grant will allow their research team to investigate the effectiveness of testing procedures to examine the spoken language development of people with Fragile [...]
As scientists uncover the precise links between autism and the Fragile X gene, potential treatments to reverse many of the core symptoms of both autism and Fragile X syndrome (FXS) are moving closer to reality.
The three bills which comprised the TEAM Act began and finished the 112th Congress without ever making it to a vote. The package of bills serve the dual function of promoting the training and employment [...]
The following is about a topic important to all parents of children with FXS, including those who are now adults or soon to become adults. The NFXF continues to provide leadership on issues related to [...]
Jeffrey Cohen Director of Government Affairs & Advocacy In case you hadn’t noticed there’s a big election coming up. The upcoming presidential election is sure to have an impact on our country, your locale [...]
Jeffrey Cohen Director of Government Affairs & Advocacy During the week of June 25th I was scheduled to be in DC to attend Congressional Hearings on Seclusion and Restraint and to meet with [...]
Jeffrey Cohen Director of Government Affairs & Advocacy To the casual observer it may look like absolutely nothing is going on in Washington, DC but if your observation stopped there you’d be missing a [...]
Rep. Gregg Harper Special to Roll Call May 14, 2012, Midnight Every day in schools across the United States, students are being subjected to barbaric and potentially deadly treatment in the form of seclusion [...]
The National Fragile X Foundation is co-hosting National Achieving a Better Life Experience (ABLE) Act Call-In Day on Wednesday, April 25, along with Autism Speaks, National Down Syndrome Society, Muscular Dystrophy Association, NDSC, and several [...]
As part of our continuing public policy activities, we have been monitoring the incremental implementation of the Affordable Care Act (ACA). Many of you know that the Act is currently under review by the Supreme [...]
