- Fragile X-associated Disorders
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It is a two-day event in which:
Parents, family members and self-advocates living with Fragile X are encouraged to take part in this powerful experience. Let your voices be heard in Washington, DC!
The next NFXF Advocacy Day takes place on March 1-2, 2016, when Congress is considering the federal budget for the following year.
Training is held at our officially designated hotel, DoubleTree by Hilton Hotel, Washington, DC – Crystal City. We have a block of rooms at a discounted rate.
When we organize NFXF Advocacy Day each year, we commit to several financial expenses based on the number of attendees. Because of increased expenses, we will be charging $25 per person 12 years of age and older who are planning to attend the training or the meetings with the MOC.
We urge you to join us in our legislative advocacy efforts. Rest assured your voices, individually and collectively, will be heard loud and clear in the halls of Congress.
Your participation as a Fragile X advocate makes a difference!
If you have any questions about any aspect of NFXF Advocacy Day, email Jeffrey Cohen, Director Public Policy & Government Affairs, at firstname.lastname@example.org
On March 2-3, 2016 the NFXF held its 13th Annual Advocacy Day in Washington, D.C. It was a resounding success was attended by 150 advocates from 30 states. This included a record number of siblings and self-advocates who have rapidly become some of the most enthusiastic and impactful advocates for Fragile X. » FULL ARTICLE
NFXF Advocacy Day is a two-day event. March 1 -- 1 PM – 5 PM: Training for what to expect and do when you go onto Capitol Hill the following day. March 2 -- 6:30 AM – 5 PM: Capitol Hill visits. There are two things we would like for you to do before you come to the training in Washington, DC. Prepare a handout to give to your Members of Congress (MOC) or their staffer (whom you will most likely meet). Here are examples of what we mean by handout – and it should include your name and a way to contact... » FULL ARTICLE
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 which provides funds for CDC and NIH for fiscal year 2016. The omnibus spending bill provides $32.1 billion for NIH, a $2 billion (6.6 percent) increase. These funds are not earmarked to any specific condition but we will continue to push for growth in the Fragile X research portfolio at NICHD, NIMH, NINDS and other NIH agencies. At the CDC’s NCBDDD, the bill does provide for... » FULL ARTICLE
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 Life Experience (ABLE) Act. The interim guidance addresses several concerns expressed in the public comment period in reference to sections of the ABLE Notice of Purposed Rule Making (NPRM) released this past June. The requirements addressed are those which: Establish safeguards to categorize distributions from ABLE accounts; Request the taxpayer identification number (TIN) of each contributor to... » FULL ARTICLE
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 of inherited intellectual or developmental disabilities, and the most common known single-gene cause of autism. The grant will be used to expand the and enroll additional participants to collect new data. It will also be used to expand analyses on existing participants to more fully understand the medical, social, and economic needs... » FULL ARTICLE
Every March, we go to Washington, DC, for National Fragile X Foundation Advocacy Day, to advocate for Fragile X funding and important issues that will impact the future of our community. It is an incredible event that not only enlightens our Members of Congress (MOC) on Capitol Hill, but inspires our advocates to make a difference in their lives and the lives of families around the nation. The advocates who joined us in Washington were all volunteers, who spent their own valuable time and money to speak on behalf of... » FULL ARTICLE
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 it has become the law of the land, what does it mean for individuals with disabilities? What is the ABLE ACT? The ABLE Act is a new law that amends the Internal Revenue Code to allow individuals with disabilities, like Fragile X, and their families to save money in ABLE Accounts. The money saved in an ABLE Account is not... » FULL ARTICLE
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 month with a vote of 404-17. If signed by President Obama, as expected, this landmark bill will become the law of the land and give millions of families supporting loved ones living with Fragile X and other disabilities the right to save for their future like every other American. A rare bipartisan effort from its... » FULL ARTICLE
We’re really close! The Achieving a Better Life Experience (ABLE) Act needs to come up for a vote this year. If it doesn't, we are back to where we started. We need your help! All you need to do is make four easy phone calls, tweets and posts to help ensure ABLE gets scheduled for a vote this year! Contact the people below and talk to them using the message points provided. Phone Call Message Points 202-224-2158 I’m calling to thank Senator Reid for being a cosponsor of the ABLE Act. Now... » FULL ARTICLE
ABLE Act hits all-time high 380 co-sponsors, appropriation injects $150 million into DOD and PRMRP, NFXF asked to nominate additional peer reviews to the PRMRP, Rep. Klein still refuses to allow debate on KASS, and NIH awards $35 million to Centers for Collaborative Research in Fragile X program. ABLE Act The ABLE Act set the world on fire in Congress and in the mainstream media before the congressional summer recess. There are now 380 co-sponsors... » FULL ARTICLE
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 Fragile X program. Investigators at these centers will seek to better understand Fragile X-associated Disorders and work toward developing effective treatments. “The NIH Centers for Collaborative Research in Fragile X program has produced a number of advancements that have lead us to this exciting period in Fragile X research,” said Jeffrey Cohen NFXF director of public policy... » FULL ARTICLE
On March 4 and 5, 2014, nearly 170 advocates, including a record number of self-advocates, braved the winter storm for the 11th annual National Fragile X Advocacy Day (NFXFAD). Due to the incoming snow, flights were cancelled left and right. Passengers were stranded at airports, others struggled to rebook their flights. Despite weather conditions, we knew this was our chance to make a statement: With a 160 meetings scheduled, not even Mother Nature could stop us from delivering our... » FULL ARTICLE
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 with the money currently designated for political nominating conventions. “Our champion Rep. Gregg Harper is truly making waves for the Fragile X community right now, and the special needs community as a whole. This is one of the few bills to pass with... » FULL ARTICLE
We can not thank you enough for advocating for Fragile X in Washington, D.C. this year! Now that we’re back home, we want to share our advocates stories with the rest of the community. If you’ve got a great story or photos, send it to us through this form and we might include it in an upcoming article or campaign!
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 X. Advocacy Day is about dissolving employment barriers and building economic opportunity. It's about all deserving individuals functioning as productive members of society. It's about the right to save and invest without penalties or loss of benefits. And overall, it's about constantly improving education and awareness. My First Advocacy Day My sister... » FULL ARTICLE