Posted at October 31, 2011 | By: | Categories: 2012,Fragile Xtras | 2 Comments

Make a Difference at Advocacy Day 2012

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 from 9am-5pm on Wednesday (March 7). The hotel is the same we stayed at last year and the rate is the same as last year ($219 plus applicable taxes and fees). Also, bus transportation will again be provided for all advocates to and from Capitol Hill. Full details can be seen in our Advocacy Day section (advocacy.fragilex.org) on our site.

Washington DC is in a real state of disarray and as of today the budget for 2012 remains unfinished (our upcoming Advocacy Day will be working on the 2013 budget year). Unless we remain good shepherds and tend to the proverbial garden we’ve cultivated since 2004 we’ll be in real danger of experiencing substantial cuts or even elimination of the programs we’ve worked so hard for at the CDC, NIH and DOD.

In addition we’ve recently seen evidence that seclusion and restraint and financial savings (ABLE) account bills may yet emerge in this Congress and will need our support. In addition the IDEA is up for reauthorization (Elementary and Secondary Education Act-ESEA) and there still may be movement on one or more of the TEAM Act package of bills. There have also been many changes in Congress and some champions we’ve worked with in the past are no longer in office and others are in jeopardy of losing their seats in 2012.

Translation: We Need You! Please join us in Washington for Advocacy Day 2012 on March 6-7, 2012. Your participation will make a difference! But don’t take my word for it; here’s what a past advocate said about the experience:

Since attending NFXF Advocacy Day I have done a lot of reflection… I often think about the impression I must have left on the legislators and staff I encountered during my visit and wonder if my presence had any impact. Then I get the emails informing me that bills we advocated for have passed and how they will benefit thousands of families. I realize then, YES of course, my input DOES matter. Before I attended Advocacy Day, I would always wonder what are they REALLY doing? Well, let me be the first one to say, I was in AWE of the whole process. Not just the political process, but how hard The NFXF works to put together such a day. Thank you for giving me the rare opportunity to see how our political system ABSOLUTELY can benefit those so near and dear to all of our hearts. Advocacy Day will be a day I will strive to be an integral part of year after year.

Hotel Information & Reservation | Advocacy Day 2012 Registration