- Fragile X-associated Disorders
- Treatment & Intervention
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National Fragile X 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, DC. 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
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,
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
. . . Read More: Senate Sends Pediatric Research Bill to President’s Desk
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
. . . Read More: Advocate Your Butt Off!
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.
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
. . . Read More: With Seaside and STX209 in Our Rearview Mirror, What’s Next?
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
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
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.
. . . Read More: Invite Your Members of Congress to a Fragile X Roundtable Discussion