2013

/2013

White House Announces New Equal Employment Rule for Americans With Disabilities

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 [...]

By | 2013-08-28T12:56:05+00:00 Aug 28, 2013|2013, Advocacy, Keeping You Informed|Comments Off on White House Announces New Equal Employment Rule for Americans With Disabilities

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 [...]

By | 2013-04-24T11:02:44+00:00 Apr 24, 2013|2013, Advocacy|Comments Off on Major Capitol Hill Publication Runs Opinion Article on Fragile X Syndrome-Autism Links

Let the Senate Know We Need Fragile X Funding!

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 [...]

By | 2013-04-17T09:10:16+00:00 Apr 17, 2013|2013, Call for Action|Comments Off on Let the Senate Know We Need Fragile X Funding!

Let Congress Know We Want Fragile X Research!

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 [...]

By | 2013-04-09T06:27:23+00:00 Apr 9, 2013|2013, Call for Action|Comments Off on Let Congress Know We Want Fragile X Research!

Public Policy at Work: Abbeduto Given $3M NICHD Grant to Study Fragile X

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 [...]

By | 2013-03-27T13:19:17+00:00 Mar 27, 2013|2013, Advocacy, News Reports and Commentaries|Comments Off on Public Policy at Work: Abbeduto Given $3M NICHD Grant to Study Fragile X

Congressman Harper Re-Introduces the TEAM Act

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 [...]

By | 2013-02-22T09:58:48+00:00 Feb 22, 2013|2013, Advocacy|Comments Off on Congressman Harper Re-Introduces the TEAM Act

Helping FX and Yourself—A Two-for-One Special!

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.

By | 2013-02-13T05:28:14+00:00 Feb 13, 2013|2013|Comments Off on Helping FX and Yourself—A Two-for-One Special!

Moving Forward to Advocacy Day

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 [...]

By | 2013-01-25T10:37:37+00:00 Jan 25, 2013|2013|Comments Off on Moving Forward to Advocacy Day

A Mom’s Introduction to NFXF Advocacy Day

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

By | 2013-01-23T09:55:46+00:00 Jan 23, 2013|2013|Comments Off on A Mom’s Introduction to NFXF Advocacy Day

Reflections on Fragile X Advocacy Day

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 [...]

By | 2013-01-14T13:40:34+00:00 Jan 14, 2013|2013|Comments Off on Reflections on Fragile X Advocacy Day

Are You Ready to Take Action?

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.

By | 2013-01-11T11:00:19+00:00 Jan 11, 2013|2013|Comments Off on Are You Ready to Take Action?
Load More Posts