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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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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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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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The ABLE ACT of 2011 (112th Congress)
Those who have participated in previous NFXF Advocacy Days and responded to prior Action Alerts know that we advocated for passage of the ABLE Act in the 111th Congress. That term ended without passage of the bill however we are pleased to report that a new ABLE Act will soon be introduced in the current Congress. Purpose: To encourage and assist individuals and families in saving private funds for the purpose of supporting individuals with
. . . Read More: The ABLE ACT of 2011 (112th Congress)
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ACTION ALERT: The Achieving a Better Life Experience Act (ABLE) of 2011
The Achieving a Better Life Experience Act (ABLE) of 2011 will be reintroduced in the U.S. Senate and House on November 15 by Represenatives Crenshaw and McMorris-Rogers and Senator Casey. The Act will give individuals with disabilities and their families the ability to save for their future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing private insurance, Medicaid, SSI, and employment. Action Required: We need
. . . Read More: ACTION ALERT: The Achieving a Better Life Experience Act (ABLE) of 2011
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10th anniversary celebration of the NCBDDD
Jeffery Cohen, Director of Governmental Affairs and Advocacy for the National Fragile X Foundation was in Washington DC last Monday and attended the 10th anniversary celebration of the National Center on Birth Defects and Developmental Disabilities (NCBDDD). 10 years ago the NFXF was part of a coalition that helped pass the Children's Health Act of
. . . Read More: 10th anniversary celebration of the NCBDDD
Posted at November 7, 2011 | Categories : 2012,Advocacy Day,Public Policy and Legislative Advocacy | 0 Comment -
Make a Difference at Advocacy Day 2012
Advocacy Day 2012 is just around the corner. The date is March 6-7, 2012 and as in prior years training will be held on Tuesday (March 6) from 1-5pm and Congressional visits will be scheduled from 9am-5pm on Wednesday (March 7). The hotel is the same we stayed at last year and the rate is the same as last year ($219 plus applicable taxes and fees). Also, bus transportation
. . . Read More: Make a Difference at Advocacy Day 2012
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Fragile X Advocacy Day 2012 information now online
Advocacy Day is an annual event sponsored and organized by the National Fragile X Foundation. Advocacy Day 2012 takes place Tuesday March 6 - Wednesday March 7, 2012, which is when Congress is considering the federal budget for the following year. Parents and family members
. . . Read More: Fragile X Advocacy Day 2012 information now online
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