Photo by Matt Wade. Courtesy of CC-BY-SA-3.0 Earlier this week, Vice President Joseph Biden announced a new rule that represents a historic advance for individuals with disabilities. By strengthening longstanding regulations under Section [...]
(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 the [...]
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.
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 "letter to appropriators" urging support for Fragile X funding has now been presented in the Senate by our FX champions, Senators Stabenow and Isakson. So far, none of their colleagues have signed on, but [...]
It’s Advocacy Time Again—Fragile X Needs Your Help Today! As you all know, nearly 200 Fragile X advocates gathered in Washington, DC on March 6 to brave the snow storm that wasn’t and then hand-carry [...]
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 [...]
The storm was billed as epic in size and duration. Its path eastward had already left a trail of one- and two-foot snowfalls across more than eight states. As NFXF Advocacy Day 2013 approached, the [...]
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 [...]
Doing the right thing, making a difference, going the extra mile, digging deep. We all know what these phrases mean, we know they require a personal commitment of time and in many cases, dollars, and we all know the sense of satisfaction and well-being we get in return. Very often these acts are charitable, with the intention to help others in need. But sometimes we are presented with opportunities to combine altruism and self-interest in one neat little package.
Jimi Grande Member of the NFXF Board of Directors and chair of its public policy committee 2012 Fragile X Advocates If you have never attended a Fragile X Advocacy Day, please make 2013 [...]
First, let me say…if you are on the fence about National Fragile X Foundation Advocacy Day and you are letting your carrier anxiety hold you back, just pop on over to the NFXF’s beautiful website right now and sign up. Do it real quick, don’t think! Just… do it. The dates are March 5-6, 2013 in Washington, DC
Faye Kuperman After participating in my first National Fragile X Foundation Advocacy Day in 2006, I wondered-and worried a little bit-about the impression I left on all the legislators and staff I encountered [...]
Are you ready to take action? Will you join us on March 5 and 6 in Washington, DC? This is a remarkable time in the Fragile X world. Effective treatments potentially capable of reversing many of the core components of FXS are within sight. The protein produced by the FMR1 gene appears to be inextricably linked to autism. Yet Congress seems unable to act. The result could be drastic cuts in programs that fund medical research. We cannot allow this to happen. The time for you to act is now.