Fwd: Advocacy Action Alert 3-11-10 URGENT

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From: j.cohen@...To: rmgarcia10@...Sent: 3/11/2010 4:01:20 P.M. Central Standard TimeSubj: Advocacy Action Alert 3-11-10 URGENT

Advocacy Day 2010ACTION ALERT-ACT TODAY

March 11, 2010 TO: All Friends of Fragile X FROM: Your NFXF Washington Team Dear Friends and Advocates,ACTION ALERT Last week nearly 150 advocates from 35 states traveled to Washington DC for NFXF Advocacy Day to ask Congress to include provisions in the FY 2011 L-HHS and Defense Appropriations budgets for additional federal resources toward research and public health activities related to Fragile X-associated Disorders.NOW YOU CAN JOIN THE EFFORT! Thanks to your support, last year we were able to build on our momentum and ensure that additional funding was devoted to important Fragile X-associated disorders initiatives and research. But there is still much work to be done! Similar to what we faced last year, federal funds are again tight and Congress is increasingly strained to deliver additional funding to Fragile X research. As a result, it is even more important than ever that Members of Congress hear from you, as constituents and as advocates. Nothing motivates a Member of Congress more than hearing directly from YOU! Please contact your Members through the link provided below, even if you attended this year's Advocacy Conference. This year, our main requests are for: · Appropriations Report Language requesting that the National Institutes of Health urge implementation of their Research Plan on Fragile X Syndrome and Associated Disorders; and continue to fund translational research that shows significant promise of a safe and effective treatment for Fragile X-associated Disorders (FXD). · Appropriations Report Language requesting that the Centers for Disease Control and Prevention receive $2 million above FY 2010 funding levels to support and grow the National Fragile X Public Health Initiative and fund the Fragile X Clinical & Research Consortium expansion to provide outreach to geographically underserved regions.· Appropriations Report Language requesting that the Department of Defense expand the Peer-Reviewed Medical Research Program (PRMRP) to include Fragile X-associated Disorders in the eligible research topics for the FY 2011 portfolio. How It Works To make it easier for other Members of Congress to support the requests to the Appropriations Committee, Senators Debbie Stabenow (D-MI) and ny Isakson (R-GA) and Representatives Delahunt (D-MA), Gregg Harper (R-MS), and Phil Hare (D-IL) will once again circulate Senate and House letters to Appropriations Subcommittees with the requests for Fragile X funding provisions asking that other Members of Congress sign to show their support. We are asking you to e-mail your Members of Congress using the templates below to encourage them to add their name to these letters before each are delivered to the Senate and House Subcommittees. The more support we solidify, the more powerful we will be in moving the Appropriations Subcommittee to support our requests with respect to the NIH, CDC, and DOD. Please take a few minutes within the next week - right now if you can- to personalize our draft e-mail to your Members of Congress asking him or her to sign onto the Stabenow/Isakson Senate letter and Delahunt/Harper/Hare House letter to Appropriations. (If your Member of Congress is an Appropriator - which will be identified by our e-mail system - you will automatically send a letter asking for their support of these requests when the letter comes before their committee. If your Member is one of these leaders a different Thank-you letter will be sent). Just click on the following link and follow the simple instructions to personalize and generate all of these emails. The process should take no more than a couple of minutes and will make a big difference.ACT NOW-CLICK HERE If you have any questions or need assistance in completing these letters, please do not hesitate to contact:Sara Weirsara.weir@... THANK YOU for taking the time to help. The National Fragile X Foundation has the attention of Congress as it never has before - and it's because of you. P.S. Don't forget to forward this email to family and friends -EVERYONE- can join the effort. Thank You, Your National Fragile X Foundation Washington Team P.S. The co-sponsor the ABLE Act, the co-sponsor the Restraint and Seclusion Act and the Join the FX Caucus requests are not included in this Action Alert. This Alert addresses our appropriations requests only (Sign on to the Dear Colleague Letter). The remaining requests will be the subject of a future Action Alert. Please excuse us if you receive this email more than once-we're updating our database.

Including appropriations that will likely be made this year, NFXF Advocates will have been responsible for 10 million new dollars for Fragile X Research and Programming at the CDC and a near doubling of the NIH Fragile X Research Budget to nearly 30 million dollars annually.

View the 2010 NFXF Advocacy Day Video that's burning up YouTube and comments from Filmmaker Salomon

View Representative Gregg Harper's speech about Fragile X to the House of Representatives on NFXF Advocacy Day

View the Press Release fromRepresentative Phil Hare about Fragile X and NFXF Advocacy Day

Link to Donate Now

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