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 [...]
The STX209 Saga and Beyond—What We’ve Done, What We’re Doing and What’s the Plan
(c) Photo: Laura Gilmore For more than 10 years the NFXF has been participating in the life-sized chess game that is the federal budget. Even before the decision was made to bring [...]
A Bump in the Drug Therapy Road: What Can Advocates Do?
Note: Just before I wrote this article, a group of parents that Margaret Mead could have easily been describing when she penned her most famous quote ("Never doubt that a small group of committed people [...]
Advocacy From Home: How to Establish Fragile X Awareness Day
We often hear from parents who say they really wish they could do more for Fragile X awareness but cannot due to lack of time, money or childcare. So we are here to say there are multiple ways to get involved and spread awareness right from your own home. One terrific way is to establish a Fragile X Awareness Day in your state. It may sound intimidating but the process is not really a difficult one.
The Fruits of Your Labor: Letter to the Appropriators signed by Senators
On Fragile X Advocacy Day, nearly 200 FX advocates braved the "Snowstorm That Wasn't" and asked their Members of Congress to sign letters to appropriators that were circulating from Senators Stabenow and Isakson and Representatives [...]
Major Capitol Hill Publication Runs Opinion Article on Fragile X Syndrome-Autism Links
Reps. Harper & Engel Cite New Research Breakthroughs; to Host Congressional Roundtable on May 17th The article which appears below ran in yesterday’s Roll Call newspaper, which is delivered to all congressional offices and widely available on [...]
Public Policy at Work: Abbeduto Given $3M NICHD Grant to Study Fragile X
The UC Davis MIND Institute reported on its website that a $3 million grant will allow their research team to investigate the effectiveness of testing procedures to examine the spoken language development of people with Fragile [...]