- Fragile X-associated Disorders
- Treatment & Intervention
- Public Policy & Legislative Advocacy
- Support the NFXF
Advocacy Day is an annual event sponsored and organized by the National Fragile X Foundation. It takes place in late February to 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.
The NFXF established a comprehensive public policy and legislative advocacy program in recognition of the critical role played by the federal government in funding scientific research and in establishing service related programs for individuals and families coping with Fragile X-associated Disorders. Since the first annual Advocacy Day in 2004 the NFXF has actively recruited and steadily increased the number of advocates marching on Capitol Hill and relating their stories about Fragile X-associated Disorders, their families, and the need for increased funding for NIH research, for the FX public health program at the Centers for Disease Control (CDC), and for the Fragile X Clinical and Research Consortium. This year our goal is to be at least 200 strong! Please join us!
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 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 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
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
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 Capitol Hill. The authors are Congressional Fragile X Caucus Co-Chairmen Greg Harper (R-MS) and Eliot Engel (D-NY). In it they highlight the advancements being made in identifying the links between fragile
The "letter to appropriators" urging support for Fragile X funding has now been presented in the Senate by our FX champions, Senators Stabenow and Isakson. So far, none of their colleagues have signed on, but this is where YOU can help! Please write to both of your U.S. Senators today and ask them to join with our champions in supporting continued funding for FX. This
. . . Read More: Let the Senate Know We Need Fragile X Funding!
It’s Advocacy Time Again—Fragile X Needs Your Help Today! As you all know, nearly 200 Fragile X advocates gathered in Washington, DC on March 6 to brave the snow storm that wasn’t and then hand-carry our message to support FX research right into the halls of Congress. Typically the “Dear Colleague” and “Letter-to-Appropriators” we want our Members of Congress to sign would have been circulating before now…but nothing is typical in DC these days. That means the
. . . Read More: Let Congress Know We Want Fragile X Research!
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 X syndrome and people with Down syndrome. The grant was awarded by the Eunice Kennedy Shriver National Institute of Child Health and the Human Development of
The storm was billed as epic in size and duration. Its path eastward had already left a trail of one- and two-foot snowfalls across more than eight states. As NFXF Advocacy Day 2013 approached, the 24-hour news cycle became ever more consumed with coverage of this monster storm. Phone calls and all modes of e-communications urgently questioned: Could our Advocacy Day scheduled for March 6, 2013
The three bills which comprised the TEAM Act began and finished the 112th Congress without ever making it to a vote. The package of bills serve the dual function of promoting the training and employment of individuals with disabilities on the one hand and taking a government-wide critical look at how these activities are funded and reorganizing those activities to take maximum advantage
. . . Read More: Congressman Harper Re-Introduces the TEAM Act
Doing the right thing, making a difference, going the extra mile, digging deep. We all know what these phrases mean, we know they require a personal commitment of time and in many cases, dollars, and we all know the sense of satisfaction and well-being we get in return. Very often these acts are charitable, with the intention to help others in need. But sometimes we are presented with opportunities to combine altruism and self-interest in
. . . Read More: Helping FX and Yourself—A Two-for-One Special!
Jimi Grande Member of the NFXF Board of Directors and chair of its public policy committee If you have never attended a Fragile X Advocacy Day, please make 2013 your first! And if you have attended, you know how powerful it is, so come on back! We parents, grandparents, siblings, therapists, researchers and caregivers to those impacted by
. . . Read More: Moving Forward to Advocacy Day