Congress Passes the RAISE Act

By |2018-01-10T17:43:11-05:00Jan 10, 2018|Advocacy, Advocacy Day|

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 [...]

The 'Asks' for NFXFAD2017

By |2017-02-09T10:24:47-05:00Feb 9, 2017|Advocacy Day|

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.

The Smiling Faces of Our Advocates are Worth More Than Millions

By |2017-01-23T13:47:34-05:00Jan 23, 2017|Advocacy Day|

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.

ABLE ACT Passes Senate

By |2014-12-17T08:31:13-05:00Dec 17, 2014|2015, Advocacy, Advocacy Day|

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 [...]

Advocate Your Butt Off!

By |2014-01-23T10:22:05-05:00Jan 23, 2014|2014, Advocacy Day|

Get up and join me because we're going to advocate our butts off! Maybe advocating is not actually a proven workout technique, but it will result in improvements. is not just about Fragile [...]