2012

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Advocacy Day 2012 Wrap Up

Thanks to everyone who participated in Fragile X Advocacy Day 2012. It is now one for the books, as they say, but our work is by no means finished. More than 150 advocates registered and [...]

By | 2012-03-13T09:24:32+00:00 Mar 13, 2012|2012|Comments Off on Advocacy Day 2012 Wrap Up

A Mom's Introduction to Advocacy Day

The following is a personal blog post written by Melissa Welin, Co-Founder of the Fragile X LINKS Group of Eastern Massachusetts giving an introduction to Advocacy Day through the eyes of a first time advocate. [...]

By | 2012-02-07T12:29:49+00:00 Feb 7, 2012|2012, Guest Submission|Comments Off on A Mom's Introduction to Advocacy Day

Are You Willing to Stand Up and Be Counted?

Join us in Washington, DC to inform Members of Congress that real drug treatments capable of making tangible improvements in the quality of life for individuals living with Fragile X have progressed from [...]

By | 2012-01-31T11:26:28+00:00 Jan 31, 2012|2012, Fragile Xtras|Comments Off on Are You Willing to Stand Up and Be Counted?

Introducing the Keeping All Students Safe Act

Senator Tom Harkin (D-IA), Chairman of the Senate Health, Education, Labor and Pensions Committee, introduced the Keeping All Students Safe Act, a bill to protect students from ineffective and dangerous seclusion and restraint practices in [...]

By | 2011-12-20T12:16:45+00:00 Dec 20, 2011|2012|Comments Off on Introducing the Keeping All Students Safe Act

An Opportunity To Make a Difference

To my friends in the Fragile X community: As you will read in the current issue of the Foundation Quarterly the state of affairs in our nation’s capitol is……unsettled. Drastic cuts loom and unless we [...]

By | 2011-12-09T11:09:15+00:00 Dec 9, 2011|2012, Action Alert|Comments Off on An Opportunity To Make a Difference

Washington Update – ABLE Act & Budgets

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 [...]

By | 2011-11-18T10:34:48+00:00 Nov 18, 2011|2012|Comments Off on Washington Update – ABLE Act & Budgets

The ABLE ACT of 2011 (112th Congress)

Those who have participated in previous NFXF Advocacy Days and responded to prior Action Alerts know that we advocated for passage of the ABLE Act in the 111th Congress. That term ended without passage of [...]

By | 2011-11-10T09:40:02+00:00 Nov 10, 2011|2012|Comments Off on The ABLE ACT of 2011 (112th Congress)

10th anniversary celebration of the NCBDDD

Jeffery Cohen, Director of Governmental Affairs and Advocacy for the National Fragile X Foundation was in Washington DC last Monday and attended the 10th anniversary celebration of the National Center on Birth Defects and Developmental [...]

By | 2011-11-07T11:48:20+00:00 Nov 7, 2011|2012, Advocacy, Advocacy Day|Comments Off on 10th anniversary celebration of the NCBDDD

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 [...]

By | 2011-10-31T14:35:41+00:00 Oct 31, 2011|2012, Fragile Xtras|Comments Off on Make a Difference at Advocacy Day 2012

Fragile X Advocacy Day 2012 information now online

Advocacy Day is an annual event sponsored and organized by the National Fragile X Foundation. Advocacy Day 2012 takes place Tuesday March 6 - Wednesday March 7, 2012, which is when Congress is [...]

By | 2011-09-30T11:13:23+00:00 Sep 30, 2011|2012|Comments Off on Fragile X Advocacy Day 2012 information now online