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9 05, 2018

Supporting DOD Research for Fragile X

By |2018-05-09T14:49:15-04:00May 9, 2018|Advocacy, Research|Comments Off on Supporting DOD Research for Fragile X

Several years ago, NFXF Advocates were successful in adding Fragile X research to the Department of Defense's Congressional Directed Medical Research Program (CDMRP) list of authorized research areas. Each year, the NFXF advocates for continuation ...

1 03, 2018

Fragile X Research at the DOD

By |2018-03-01T10:55:45-05:00Mar 1, 2018|Advocacy, Research|Comments Off on Fragile X Research at the DOD

Thanks to the hard work of NFXF Advocates years ago, Fragile X is one of the authorized research areas at the Department of Defense's Congressionally Directed Medical Research Program (DOD CDMRP). Millions of dollars in ...

29 05, 2017

Advocacy

By |2020-01-31T13:55:28-05:00May 29, 2017|Comments Off on Advocacy

On National Fragile X Foundation leads an advocacy program to advance research funding for Fragile X and programs to provide better lives and opportunities for individuals living with Fragile X and other intellectual and ...

20 11, 2019

NFXF Advocacy Day

By |2019-11-25T09:27:18-05:00Nov 20, 2019|Comments Off on NFXF Advocacy Day

NFXF Advocacy Day The National Fragile X Foundation leads an advocacy program to advance research funding for Fragile X and programs to provide better lives and opportunities for individuals living with Fragile X and other ...

29 07, 2019

Fragile X Advocacy – August Recess Visits

By |2019-07-29T09:55:56-04:00Jul 29, 2019|Advocacy|Comments Off on Fragile X Advocacy – August Recess Visits

For the third year in a row, we are partnering with Rare Disease Legislative Advocates, a project of the EveryLife Foundation, to schedule Fragile X advocacy meetings with members of Congress and their staff during the August recess. Here is what you need to know.

23 05, 2017

Our Team

By |2020-06-02T17:02:55-04:00May 23, 2017|Comments Off on Our Team

Meet Our Team Linda has been a member of the NFXF team since 2004. She has over 25 years of experience in non-profit programs, operations management, board and volunteer development. She ...

24 03, 2016

Advocacy Update: Advocacy Day 2016 and Fragile X Research Funding

By |2016-03-24T14:00:48-04:00Mar 24, 2016|2016, Advocacy|Comments Off on Advocacy Update: Advocacy Day 2016 and Fragile X Research Funding

On March 2-3, 2016 the NFXF held its 13th Annual Advocacy Day in Washington, D.C. It was a resounding success was attended by 150 advocates from 30 states. This included a record number of siblings and self-advocates who have rapidly become some of the most enthusiastic and impactful advocates for Fragile X.

28 02, 2019

NFXF Advocacy Day – Another Success

By |2019-02-28T13:51:49-05:00Feb 28, 2019|Advocacy|Comments Off on NFXF Advocacy Day – Another Success

Advocacy Day 2019 is done, and by all measures, it was another success. Fragile X advocates visited 56 Senate offices and 61 House offices – all of their home districts. We had fun, connected with ...

29 09, 2014

Warm Up for NFXF Advocacy Day 2015

By |2014-09-29T16:19:36-04:00Sep 29, 2014|2015|Comments Off on Warm Up for NFXF Advocacy Day 2015

ABLE Act hits all-time high 380 co-sponsors, appropriation injects $150 million into DOD and PRMRP, NFXF asked to nominate additional peer reviews to the PRMRP, Rep. Klein still refuses to allow debate on KASS, and ...

23 02, 2012

Public Policy Is for People!

By |2012-02-23T20:41:55-05:00Feb 23, 2012|Advocacy|Comments Off on 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 ...

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