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National Fragile X Foundation Advocacy Day is an annual event sponsored and organized by the National Fragile X Foundation. It takes place in early March each year when Congress is considering the federal budget for the following year. Parents and family members impacted by Fragile X-associated Disorders are encouraged to take part in this powerful experience that provides a unique opportunity to let your voices be heard in Washington, D.C. We urge you to join us in our legislative advocacy effort. Rest assured that your voices, individually and collectively, will be heard loud and clear in the halls of Congress.
In just a few short years the modest investment that the NFXF has made in advocacy activities and the monumental effort of our advocates have resulted in nearly 10 million dollars in new investment by the federal government in Fragile X research and programming at the Centers for Disease Control (CDC) and Department of Defense and a near doubling (from ~$15M to ~$29M yearly) in existing research programs at the NIH.
Your participation as a Fragile X Advocate makes a difference!
If you are on twitter please feel free to use the hashtag #NFXFAD
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
Some may call me a Washington Insider. I work inside the Beltway as a lobbyist who meets with Members of Congress every day trying to make a case for action. My office is right next to the Capitol. You could also call me a Fragile X Insider. » FULL ARTICLE
Registration is now open National Fragile X Advocacy Day is March 4-5, 2014. Let your voice be heard in the halls of Congress. Online Registration Full details can be found online at fxadvocacy.fragilex.org. We hope to see you in DC!
The official result of the Seaside trials was that STX209 did not do what its makers thought it would. The present structure of FDA trials requires that the proponents of a new drug predict what it will do and then conduct trials to determine whether the drug delivers the predicted results. If it does not, that particular trial is deemed a failure and cannot be relied upon to make the case for formal approval of the drug. » FULL ARTICLE
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 503 of the Rehabilitation Act, the new rule aims to ensure that qualified workers have more meaningful opportunities to find, secure and keep good jobs. Many of you may be familiar with Section 504 of the Rehabilitation Act, which mandates equal access to educational services for those... » FULL ARTICLE
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 the 2004 International Conference to Washington, DC, we had taken the plunge and begun participating in a number of efforts to impact the allocation of federal dollars to Fragile X programming and research. Since those early days, the National Institutes of Health has approximately tripled its yearly spending on FX research, which is now... » FULL ARTICLE
On May 17th, Representatives Gregg Harper and Eliot Engel will be hosting a Roundtable discussion on Fragile X and autism for members of Congress and their staff. Please send an email today to invite your Members of Congress to this important event. » FULL ARTICLE
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 Harper and Engel. Here's a copy of that signed Senate letter which has now been sent to the Appropriations Committee. If your Senators' name doesn't appear and you think it should have, give their office a call and politely inquire. Sometimes it's an honest mistake, so don't assume that you were promised something... » FULL ARTICLE