If you have ever spent more than 5 minutes with Dillon Kelley, you know two things—you know about Fragile X and you know that, one day, Dillon Kelley will be a member of Congress.
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 [...]
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 - [...]
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 [...]
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 [...]
Health Insurance, Medicaid, and SSI/SSDI These are three issues that aren’t going away. They are especially critical for Fragile X families and other families with disabilities, lifelong care needs, etc. To help your members [...]
There are two things we would like for you to do before you come to the training in Washington, DC.
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.
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.
Make no mistake, due to the rules associated with our tax-exempt 501(c)3 status, which prohibit the NFXF from directly or indirectly participating in, or intervening in, any political campaign on behalf of (or in [...]
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 [...]
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 [...]
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 [...]
On December 19, 2014 the ABLE Act was signed into law by President Obama. ABLE was truly bipartisan, and had overwhelming support from both sides of the aisle in the House and Senate. Now that [...]
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 [...]