Advocacy Day

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How to Advocate for Fragile X Families

NFXF Advocates spend time advocating with Congress for Fragile X priorities we can all get behind and have a tremendous success record: Approximately $350/million per year in research. This wouldn’t get the attention it [...]

By | 2018-12-04T16:16:20+00:00 Nov 30, 2018|Advocacy, Advocacy Day|Comments Off on How to Advocate for Fragile X Families

Another Advocacy Day in the Books

This Tuesday, more than 150 National Fragile X Foundation volunteers representing 27 states traveled to Washington, DC for NFXF Advocacy Day. In 130 meetings, our parents, grandparents, siblings, aunts, uncles, cousins, friends, professionals, and - [...]

By | 2018-03-08T15:37:18+00:00 Mar 8, 2018|Advocacy, Advocacy Day|Comments Off on Another Advocacy Day in the Books

Join us for Advocacy Day

If you have been to Advocacy Day, you know it is not only a critical time to raise awareness of Fragile X among our nation’s decision makers and advocate for research and public policies that [...]

By | 2018-02-12T18:29:20+00:00 Feb 2, 2018|Advocacy Day|Comments Off on Join us for Advocacy Day

Congress Passes the RAISE Act

Last night, Congress passed the RAISE Family Caregivers Act. The bill, introduced by Fragile X Caucus co-chair and parent, Rep. Gregg Harper, directs the Secretary of HHS to work with stakeholders from state and local [...]

By | 2018-01-10T17:43:11+00:00 Jan 10, 2018|Advocacy, Advocacy Day|Comments Off on Congress Passes the RAISE Act

The 'Asks' for NFXFAD2017

In preparation for the National Fragile X Foundation's Advocacy Day 2017, we are publishing initial details on our "asks" for this year's meetings. It is our goal to provide each advocate ample time to prepare, in an effort to ease anxiety related to the day. Our asks, as always, are bipartisan and reflect the best interests of our community. Personal politics have no place in Advocacy Day so we hope each of you will come to Washington, DC prepared to share your story and fight for the needs of all those living with Fragile X.

By | 2017-02-09T10:24:47+00:00 Feb 9, 2017|Advocacy Day|Comments Off on The 'Asks' for NFXFAD2017

The Smiling Faces of Our Advocates are Worth More Than Millions

NFXF advocates have been to Washington every year since 2004, and we’ll be there on March 1, 2017, on our 14th consecutive year. Some years, our high hopes were realized and new programs were created because of our hard work. Other years, turmoil in all quarters put us at-risk for cuts, or elimination, but we were thrilled to maintain the status quo. Last year, we stayed in the game and made new, or nurtured, old relationships to make sure we’d be there when the budget reigns loosened. This year our budget balancing act continues, and new friendships with eager learners await our advocates smiling faces. Join us and help us fight the good fight.

By | 2017-01-23T13:47:34+00:00 Jan 23, 2017|Advocacy Day|Comments Off on The Smiling Faces of Our Advocates are Worth More Than Millions

Omnibus Spending Bill Increases Funds for NIH

Today, Congressional leaders released the text of the omnibus spending bill that will be debated and hopefully passed before Congress adjourns for the year. The omnibus bill funds all 12 appropriations bills, including THE one [...]

By | 2015-12-16T13:34:32+00:00 Dec 16, 2015|Advocacy, Advocacy Day|Comments Off on Omnibus Spending Bill Increases Funds for NIH

New ABLE Guidelines Issued

The NFXF is a participating member of the ABLE National Resource Center On Friday November 20, 2105 the US Department of Treasury and the IRS released interim guidance regarding the Stephen Beck Jr, Achieving a Better [...]

By | 2015-12-03T17:35:26+00:00 Dec 3, 2015|Advocacy Day|Comments Off on New ABLE Guidelines Issued

CDC Awards $1.75 Million Grant to Expand Nationwide Registry for Fragile X Syndrome

A $1.75 million grant to continue research on Fragile X syndrome was given to the Institute for Basic Research (IBR), Willowbrook, by the Centers for Disease Control. Fragile X syndrome is the most common known cause [...]

By | 2015-09-14T13:37:20+00:00 Sep 14, 2015|Advocacy Day, FXCRC and Clinics, In the News, Keeping You Informed|Comments Off on CDC Awards $1.75 Million Grant to Expand Nationwide Registry for Fragile X Syndrome

ABLE ACT Passes Senate

WASHINGTON, D.C. – Culminating a nearly eight year effort spanning four sessions of Congress the ABLE Act passed the Senate late Tuesday night with a vote of 76-16. The bill overwhelmingly earlier this [...]

By | 2014-12-17T08:31:13+00:00 Dec 17, 2014|2015, Advocacy, Advocacy Day|Comments Off on ABLE ACT Passes Senate
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