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Language is critical in much of daily life. Making friends, learning in school and holding down a job, all require language. For people with more limited language, like so many with Fragile X syndrome (FXS), researchers and clinicians are trying to figure out ways of improving language so that inclusion in more of life’s activities will be possible.
Anyone who lives with a person with Fragile X is very familiar with this continuation of a repeated word or phrase. This repetition can be maddening when you are the recipient. At face value, perseveration has no redeeming features and simply serves as an irritant, but in the life of one with Fragile X syndrome (FXS), it can be a valuable asset. Perseverative verbiage often accompanies arousal and acts as a buffer to reduce the anxiety. The repetition can be comforting like a mantra or song.
On March 2-3, 2016 the NFXF held its 13th Annual Advocacy Day in Washington, D.C. It was a resounding success was attended by 150 advocates from 30 states. This included a record number of siblings and self-advocates who have rapidly become some of the most enthusiastic and impactful advocates for Fragile X.
Here’s a question I often hear from families at election time: Which candidate(s) would be best for Fragile X? First of all, the NFXF is a non-profit, so we are by law (as well as [...]
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 [...]
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 [...]
"Public Policy Is for People!" reflects a fundamental truth about the legislative advocacy efforts we pursue at the National Fragile X Foundation. Yes, "public policy" may sound like a forgettable chapter in your high school [...]
Good news! The 2012 federal budget process has finally concluded, and Fragile X has emerged from the process with federal funding and programs intact. This was only because of the relationships we’ve nurtured and grown [...]
Despite the fact that we're now 7 weeks into fiscal year 2012 the budget for 2012 that impacts FX research and programming (CDC, NIH, DOD) remains unfinished. There was a slim chance that it would [...]
Advocacy Day 2012 is just around the corner. The date is March 6-7, 2012 and as in prior years training will be held on Tuesday (March 6) from 1-5pm and Congressional visits will be scheduled [...]
