Advocacy

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How to Advocate for Fragile X Families

NFXF Advocates spend time advocating with Congress for Fragile X priorities we can all get behind and have a tremendous success record: Approximately $350/million per year in research. This wouldn’t get the attention it [...]

By | 2018-12-04T16:16:20+00:00 Nov 30, 2018|Advocacy, Advocacy Day|Comments Off on How to Advocate for Fragile X Families

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 [...]

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

Another Advocacy Day in the Books

This Tuesday, more than 150 National Fragile X Foundation volunteers representing 27 states traveled to Washington, DC for NFXF Advocacy Day. In 130 meetings, our parents, grandparents, siblings, aunts, uncles, cousins, friends, professionals, and - [...]

By | 2018-03-08T15:37:18+00:00 Mar 8, 2018|Advocacy, Advocacy Day|Comments Off on Another Advocacy Day in the Books

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 [...]

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

Help Guide Fragile X Research at NIH

Last year, the National Institutes of Health (NIH) funded $46 million in Fragile X research, an amount that has trended upwards in the past few years. Over the years, they have funded hundreds of millions [...]

By | 2018-02-16T17:40:50+00:00 Feb 16, 2018|Advocacy, Research|Comments Off on Help Guide Fragile X Research at NIH

Congress Passes the RAISE Act

Last night, Congress passed the RAISE Family Caregivers Act. The bill, introduced by Fragile X Caucus co-chair and parent, Rep. Gregg Harper, directs the Secretary of HHS to work with stakeholders from state and local [...]

By | 2018-01-10T17:43:11+00:00 Jan 10, 2018|Advocacy, Advocacy Day|Comments Off on Congress Passes the RAISE Act

Advocacy Update: Local Meetings with Members of Congress

NFXF advocates are out in force during the August recess to meet with their Members of Congress and staff to raise awareness of Fragile X. They are discussing the public policy priorities of the [...]

By | 2017-08-08T14:23:04+00:00 Aug 8, 2017|Advocacy|Comments Off on Advocacy Update: Local Meetings with Members of Congress

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 | 2017-06-13T15:56:45+00:00 Jun 13, 2017|Advocacy, Export|Comments Off on Advocacy Update: Contact Congress Today

Letter to Congress on Budgets and Healthcare

June 13, 2017 Dear Members of Congress: The National Fragile X Foundation works to provide support, awareness and research for families with Fragile X. Fragile X (FX) is a group of genetic disorders caused by [...]

By | 2017-06-13T14:55:00+00:00 Jun 13, 2017|Advocacy, Export|Comments Off on Letter to Congress on Budgets and Healthcare

Advocacy Update: Budgets, Budgets, and Budgets

The President released his more detailed Fiscal Year 2018 Budget today. You can read it all here. There are items to concern families living with disabilities, such as research and Medicaid funding. [...]

By | 2017-06-24T23:58:31+00:00 May 23, 2017|Advocacy|Comments Off on Advocacy Update: Budgets, Budgets, and Budgets

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 | 2017-06-24T23:58:36+00:00 May 2, 2017|Advocacy|Comments Off on Advocacy Update: Appropriations and Coalitions
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