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Rep. Harper: Restraint Guidelines Endanger Children
Rep. Gregg Harper Special to Roll Call May 14, 2012, Midnight Every day in schools across the United States, students are being subjected to barbaric and potentially deadly treatment in the form of seclusion and restraint. According to leading education researchers and child trauma experts, as well as the Government Accountability Office, the use of these practices — which include forcibly pinning students to the ground, strapping them to chairs or locking them in closets —
. . . Read More: Rep. Harper: Restraint Guidelines Endanger Children
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National Call-In Day in Support of the ABLE Act , Wednesday April 25, 2012
The National Fragile X Foundation is co-hosting National Achieving a Better Life Experience (ABLE) Act Call-In Day on Wednesday, April 25, along with Autism Speaks, National Down Syndrome Society, Muscular Dystrophy Association, NDSC, and several other disability organizations. The purpose of this call-in day is to encourage advocates across the country to call Congressional offices that have not signed onto the ABLE Act and ask for their support. Learn more and become an
. . . Read More: National Call-In Day in Support of the ABLE Act , Wednesday April 25, 2012
Posted at April 25, 2012 | Categories : Action Alert,Public Policy and Legislative Advocacy | 3 Comments -
A Letter to Implement the Affordable Care Act
As part of our continuing public policy activities, we have been monitoring the incremental implementation of the Affordable Care Act (ACA). Many of you know that the Act is currently under review by the Supreme Court but right now its the law of the land. Part of the act includes establishing a list of Essential Health
. . . Read More: A Letter to Implement the Affordable Care Act
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The National Fragile X Foundation Takes Washington by Storm!
Although the sky was sunny and the temperature near 70, Washington, DC was taken by storm this past March 6 and 7. But it was the cause of Fragile X and not rain that appeared on the map. Nearly 150 advocates represented close to two-thirds of the U.S. with great energy and pride as they delivered our message for continued, level and dedicated funding for FX research and programming at the NIH, CDC and DOD. Advocates
. . . Read More: The National Fragile X Foundation Takes Washington by Storm!
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There is Still Time to Let Your Voice be Heard!
On Thursday we asked you to Help Us Keep Fragile X in the Federal Budget! Since our request we have received over 2,700 letters have been sent in favor of continuing funding for Fragile X research. We have 46 states representing with only ND, DE, and RI with no respondents. If you have not sent in your letter, you can do so now. It takes on a couple minutes to fill in the form
. . . Read More: There is Still Time to Let Your Voice be Heard!
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Help Us Keep Fragile X in the Federal Budget! (Deadline March 20th)
It's been one week since Fragile X Advocacy Day 2012, and we need your help—right now! (Even if you didn’t participate in Advocacy Day.) The more people who help, the better it will be for the cause of Fragile X. What we want to do is make sure that Fragile X stays in the Federal Budget to continue supporting Fragile X research and programming. All you have to do is follow the link below, fill
. . . Read More: Help Us Keep Fragile X in the Federal Budget! (Deadline March 20th)
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Advocacy Day 2012 Wrap Up
Thanks to everyone who participated in Fragile X Advocacy Day 2012. It is now one for the books, as they say, but our work is by no means finished. More than 150 advocates registered and most attended. We represented nearly 2/3 of the U.S. with great energy and pride. We spent two glorious day
. . . Read More: Advocacy Day 2012 Wrap Up
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Public Policy Is for People!
"Public Policy Is for People!" reflects a fundamental truth about the legislative advocacy efforts we pursue at the National Fragile X Foundation. Yes, "public policy" may sound like a forgettable chapter in your high school civics class. But in reality, it dramatically affects the everyday welfare and future hopes of every person in the Fragile X community. That's why we are writing
. . . Read More: Public Policy Is for People!
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A Mom’s Introduction to Advocacy Day
The following is a personal blog post written by Melissa Welin, Co-Founder of the Fragile X LINKS Group of Eastern Massachusetts giving an introduction to Advocacy Day through the eyes of a first time advocate. Melissa first attended Fragile X Advocacy Day last year and plans to be an advocate again this year. First, let me say…if you
. . . Read More: A Mom's Introduction to Advocacy Day
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Are You Willing to Stand Up and Be Counted?
Join us in Washington, DC to inform Members of Congress that real drug treatments capable of making tangible improvements in the quality of life for individuals living with Fragile X have progressed from "theoretically possible" to "cautiously probable." –and urge them to make sure that the services to bring these developments to market - are adequately funded. We
. . . Read More: Are You Willing to Stand Up and Be Counted?
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(Fragile) X Marks a Life-Changing Spot
Source: Department of Defense: Congressionally Directed Medical Research Programs Andrew Selinger The dream of every parent is for each of their children to be happy and healthy. For Andrew Selinger, that dream is bittersweet. His daughter, Jodi, and son, Brian, both have Fragile X Syndrome, an inherited intellectual disability. Having one child with the condition is challenging enough, but when both were found to
. . . Read More: (Fragile) X Marks a Life-Changing Spot
Posted at January 27, 2012 | Categories : Connecticut,Guest Submission,Public Policy and Legislative Advocacy | 4 Comments -
The 2012 Federal Budget: What it Means for Fragile X Programs and Funding
Good news! The 2012 federal budget process has finally concluded, and Fragile X has emerged from the process with federal funding and programs intact. This was only because of the relationships we’ve nurtured and grown since the first Fragile X Advocacy Day in 2004, and because we continued to make the case for our cause with Members of Congress. Next year is certain to present equal or greater challenges, and that’s why if you’ve attended Advocacy
. . . Read More: The 2012 Federal Budget: What it Means for Fragile X Programs and Funding
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Introducing the Keeping All Students Safe Act
Senator Tom Harkin (D-IA), Chairman of the Senate Health, Education, Labor and Pensions Committee, introduced the Keeping All Students Safe Act, a bill to protect students from ineffective and dangerous seclusion and restraint practices in schools. Advocacy in support of this important bill will most certainly be included on NFXF Advocacy Day 2012 (March 6-7, 2012). Add your voice to our chorus and register to join us on Advocacy Day today at
. . . Read More: Introducing the Keeping All Students Safe Act
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An Opportunity To Make a Difference
To my friends in the Fragile X community: As you will read in the current issue of the Foundation Quarterly the state of affairs in our nation’s capitol is……unsettled. Drastic cuts loom and unless we stand up for what matters to us, our programs could disappear. Whether its you that’s impacted, your child, your parent, grandparent, sibling, relative, patient, student, friend or neighbor, you have a story to tell. And telling that story really-does-make-a-difference. Sending letters works
. . . Read More: An Opportunity To Make a Difference
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Washington Update – ABLE Act & Budgets
Despite the fact that we're now 7 weeks into fiscal year 2012 the budget for 2012 that impacts FX research and programming (CDC, NIH, DOD) remains unfinished. There was a slim chance that it would wrap up before Thanksgiving but slim (and Congress) just left town for the holiday. The budget process will ramp up big-time when Congress returns from the turkey day break and will continue (probably right up to the brink of the
. . . Read More: Washington Update - ABLE Act & Budgets
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