Advocacy

Surviving Changes in Washington

As I watched the new U.S. House of Representatives be sworn in today and elect Rep. Nancy Pelosi as its new Speaker, I was reminded, again, that we are fortunate to live in a country where we can change control in Washington in the voting booth, not with tanks in the street. And when change happens, it is peaceful outside the Capital and collegial inside.

By Dan Whiting| 2019-01-03T17:53:44+00:00 Jan 3, 2019|Advocacy|Comments Off

Dillon Kelley: Standing Up to Fragile X in Congress

If you have ever spent more than 5 minutes with Dillon Kelley, you know two things—you know about Fragile X and you know that, one day, Dillon Kelley will be a member of Congress.

By Dan Whiting| 2018-12-21T17:21:05+00:00 Dec 17, 2018|Advocacy, Advocacy Day|Comments Off

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 Dan Whiting| 2018-12-04T16:16:20+00:00 Nov 30, 2018|Advocacy, Advocacy Day|Comments Off

Early Check for Fragile X Syndrome Launches in North Carolina

Early Check is a new research study, led by RTI International and a group of distinguished partners, is now available for newborn babies in North Carolina. Fragile X syndrome is included in the screening. From [...]

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

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

Congress Supports Fragile X Research and Awareness

In March, over 150 NFXF Advocates descended onto Capitol Hill to once again advocate for Fragile X and raise awareness among Congress. A top ask is to join efforts to support Fragile X programs at [...]

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

CDC Funding for Fragile X – Coalition Letter

There is strength in numbers, which is why we work with other patient advocacy groups on common goals, such as funding at the National Institutes of Health (NIH), the Centers for Disease Control and Prevention [...]

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

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

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

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

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

Advocacy Update – Emails, a Win, and a Day

Health Insurance, Medicaid, and SSI/SSDI These are three issues that aren’t going away. They are especially critical for Fragile X families and other families with disabilities, lifelong care needs, etc. To help your members [...]

By Dan Whiting| 2017-12-27T17:36:28+00:00 Dec 27, 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 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 NFXF| 2017-08-08T14:23:04+00:00 Aug 8, 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 Jun 13, 2017|Advocacy, Export|Comments Off

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

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