Advocacy Archives — National Fragile X Foundation

Early Check for Fragile X Syndrome Launches in North Carolina

Early Check is a new research study, led by RTI [...]

By Dan Whiting| 2018-10-17T10:56:14+00:00 October 17th, 2018|Advocacy, FXS, Genetics|Comments Off

Supporting DOD Research for Fragile X

Several years ago, NFXF Advocates were successful in adding Fragile [...]

By Dan Whiting| 2018-05-09T14:49:15+00:00 May 9th, 2018|Advocacy, Research|Comments Off

Congress Supports Fragile X Research and Awareness

In March, over 150 NFXF Advocates descended onto Capitol Hill [...]

By Dan Whiting| 2018-05-02T10:00:55+00:00 May 2nd, 2018|Advocacy, Research|Comments Off

CDC Funding for Fragile X – Coalition Letter

There is strength in numbers, which is why we work [...]

By Dan Whiting| 2018-04-09T15:30:50+00:00 April 9th, 2018|Advocacy, Research|Comments Off

Another Advocacy Day in the Books

This Tuesday, more than 150 National Fragile X Foundation volunteers [...]

By Dan Whiting| 2018-03-08T15:37:18+00:00 March 8th, 2018|Advocacy, Advocacy Day|Comments Off

Fragile X Research at the DOD

Thanks to the hard work of NFXF Advocates years ago, [...]

By Dan Whiting| 2018-03-01T10:55:45+00:00 March 1st, 2018|Advocacy, Research|Comments Off

Help Guide Fragile X Research at NIH

Last year, the National Institutes of Health (NIH) funded $46 [...]

By Dan Whiting| 2018-02-16T17:40:50+00:00 February 16th, 2018|Advocacy, Research|Comments Off

Congress Passes the RAISE Act

Last night, Congress passed the RAISE Family Caregivers Act. The [...]

By Dan Whiting| 2018-01-10T17:43:11+00:00 January 10th, 2018|Advocacy, Advocacy Day|Comments Off

Advocacy Update – Emails, a Win, and a Day

Health Insurance, Medicaid, and SSI/SSDI These are three issues [...]

By Dan Whiting| 2017-12-27T17:36:28+00:00 December 27th, 2017|Action Alert, Advocacy, Advocacy Day|Comments Off

Advocacy Update: Local Meetings with Members of Congress

NFXF advocates are out in force during the August [...]

By NFXF| 2017-08-08T14:23:04+00:00 August 8th, 2017|Advocacy|Comments Off

Advocacy Update: Contact Congress Today

You can send the NFXF letter (link) to staff members you have an existing relationship with or deliver it personally to staff or a member of Congress at an upcoming Town Hall or other local event.

By Dan Whiting| 2017-06-13T15:56:45+00:00 June 13th, 2017|Advocacy, Export|Comments Off

Letter to Congress on Budgets and Healthcare

June 13, 2017 Dear Members of Congress: The National Fragile [...]

By Dan Whiting| 2017-06-13T14:55:00+00:00 June 13th, 2017|Advocacy, Export|Comments Off

Advocacy Update: Budgets, Budgets, and Budgets

The President released his more detailed Fiscal [...]

By NFXF| 2017-06-24T23:58:31+00:00 May 23rd, 2017|Advocacy|Comments Off

Advocacy Update: Appropriations and Coalitions

This week, Congress should wrap up the Fiscal Year 2017 appropriations – just seven months into the fiscal year. The agreement includes an additional $2 billion for the NIH, which should translate into more funds available for Fragile X research. It also signals that Congress does not have an appetite to cut NIH funding 30%, as proposed in the President’s Fiscal Year 2018 budget outline.

By NFXF| 2017-06-24T23:58:36+00:00 May 2nd, 2017|Advocacy|Comments Off

NFXF Advocacy Update: The ABLE Act and More

Congress is moving forward [...]

By NFXF| 2017-04-12T17:11:53+00:00 April 12th, 2017|Advocacy|Comments Off