NFXF Advocacy Update: The ABLE Act and More
Congress is moving forward on our two key asks: Reps. Harper and Engel have sent their cosigned letter to the House Appropriations Committee asking for support for research at [...]
Fragile X Family Ties Run Deeper Than Party Lines
The 115th Congress is just getting underway and there is no better time to start making new friends. One of the best ways to do that is by attending the 14th annual NFXF Advocacy Day coming up on February 28 and March 1st. We need both seasoned advocates and first timers to share the load. NFXF advocates have consistently proven that participating in the process, telling your stories and making your voices heard makes all the difference in the world.
Merchandise Being Sold with Offensive “R-Word” Language
We are incredibly proud of the swift action taken by members of our community, after discovering offensive items for sale on a few major retailers' websites. We stand with you.
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 [...]
When Can We Begin Opening ABLE Accounts?
After eight long years urging passage by the US House and Senate, the ABLE Act was signed into law by President Obama in December of 2014. But ten months later, no one has been able [...]
What’s Going on in Fragile X Public Policy?
Updates on Appropriations The House Appropriations Committee will mark up the '16 Labor-HHS-E spending bill that was passed by the subcommittee last week. The bill includes $153 billion in discretionary funding, which is a $3.7 [...]
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 [...]
ABLE Passes House
Eight Years of Hard Work by Advocates, One Step Closer to Reality Today the U.S. House of Representatives passed the Achieving A Better Life Experience Act. NFXF advocates have been urging their members of Congress to [...]
NIH awards $35 Million for Fragile X Research
Three research teams receive funding over next five years The National Institutes of Health (NIH) is making funding awards of $35 million over the next five years to support the Centers for Collaborative Research in [...]
National Fragile X Advocacy Day: Speaking for Herself
2014 marked the 11th National Fragile X Foundation Advocacy Day (NFXFAD) in Washington, DC. Over the past 11 years, our annual advocacy efforts have resulted in nearly $300 million in funding for Fragile X research and clinical support. On March 4th and 5th, nearly 170 advocates participated in more than 160 meetings on Capitol Hill. Your donations played a vital role in funding the NFXFAD program and ultimately made our time in DC a success.
Senate Sends Pediatric Research Bill to President’s Desk
The bipartisan “Gabriella Miller Kids First Research Act”—a bill authored by U.S. Rep. Gregg Harper with co-authors U.S. Reps. Peter Welch and Tom Cole—is heading to the president’s desk. The bill funds pediatric medical research [...]
Raised Minimum Wage for Federal Employees Includes Employees with Disabilities
On February 12, 2014, President Barack Obama signed an executive order raising the minimum wage for employees of federal contractors, including workers with disabilities, to $10.10/hour beginning in 2015. The signing marks a historic day [...]
Massachusetts Ends Sheltered Workshops, Sets Promising Model
Blueprint for Success sets the new mission statement for Massachusetts' Employment for Individuals with Disabilities As part of the Collaboration to Promote Self-Determination, one of the issues that we at the NFXF have [...]
White House Announces New Equal Employment Rule for Americans With Disabilities
Photo by Matt Wade. Courtesy of CC-BY-SA-3.0 Earlier this week, Vice President Joseph Biden announced a new rule that represents a historic advance for individuals with disabilities. By strengthening longstanding regulations under Section [...]
Download: My State's Seclusion and Restraint Laws
Photo by Kate Tee harr. Courtesy of Flickr Creative Commons. The start of the school year is just around the corner—hold on now, breathe deeply, it's going to be OK! One of the [...]