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

By |2013-02-13T05:28:14-05:00Feb 13, 2013|2013|

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.

Moving Forward to Advocacy Day

By |2013-01-25T10:37:37-05:00Jan 25, 2013|2013|

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 ...

A Mom’s Introduction to NFXF Advocacy Day

By |2013-01-23T09:55:46-05:00Jan 23, 2013|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

Reflections on Fragile X Advocacy Day

By |2013-01-14T13:40:34-05:00Jan 14, 2013|2013|

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?

By |2013-01-11T11:00:19-05:00Jan 11, 2013|2013|

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.

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