Advocacy Archives | Page 3 of 6

Fiscal Year 2020 NICHD Funding Letter

By Dan Whiting|2019-04-30T14:18:37-04:00Apr 30, 2019|Advocacy, Research|

We work closely with several groups to help on common public policy and funding goals. These partnerships are key to our impact and an important leg in our advocacy stool. Like we say, Together, We're Stronger. One of these key partnerships is the Friends of the NICHD. The NICHD is the National Institute for Child Health and Human Development. It is one of the institutes at the National Institutes of Health (NIH) and funds most of the Fragile X research at NIH. The Friends work together to support, overall, the funding level for NICHD, which flows down to each of the research areas, including Fragile X.

NFXF Advocacy Day – Another Success

By Dan Whiting|2019-02-28T13:51:49-05:00Feb 28, 2019|Advocacy|

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 [...]

Dillon Kelley: Standing Up to Fragile X in Congress

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

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.

Early Check for Fragile X Syndrome Launches in North Carolina

By Dan Whiting|2018-10-17T10:56:14-04:00Oct 17, 2018|Advocacy, FXS, Genetics and Inheritance|

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 [...]

Supporting DOD Research for Fragile X

By Dan Whiting|2018-05-09T14:49:15-04:00May 9, 2018|Advocacy, Research|

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 [...]

Congress Supports Fragile X Research and Awareness

By Dan Whiting|2018-05-02T10:00:55-04:00May 2, 2018|Advocacy, Research|

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 [...]

CDC Funding for Fragile X – Coalition Letter

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

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 [...]

Fragile X Research at the DOD

By Dan Whiting|2018-03-01T10:55:45-05:00Mar 1, 2018|Advocacy, Research|

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 [...]

Help Guide Fragile X Research at NIH

By Dan Whiting|2018-02-16T17:40:50-05:00Feb 16, 2018|Advocacy, Research|

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 [...]

Congress Passes the RAISE Act

By Dan Whiting|2018-01-10T17:43:11-05:00Jan 10, 2018|Advocacy, Advocacy Day|

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 [...]

Letter to Congress on Budgets and Healthcare

By Dan Whiting|2020-12-31T12:48:24-05:00Jun 13, 2017|Advocacy|

A copy of a letter sent to Congress on June 13, 2017.

NFXF Advocacy Update: The ABLE Act and More

By NFXF|2017-04-12T17:11:53-04:00Apr 12, 2017|Advocacy|

Congress is moving forward on our two key asks: Reps. Harper and Engel have sent their cosigned letter to the House Appropriations Committee asking for support for research at [...]

Fragile X Family Ties Run Deeper Than Party Lines

By NFXF|2017-02-02T15:58:22-05:00Feb 2, 2017|Advocacy|

The 115th Congress is just getting underway and there is no better time to start making new friends. One of the best ways to do that is by attending the 14th annual NFXF Advocacy Day coming up on February 28 and March 1st. We need both seasoned advocates and first timers to share the load. NFXF advocates have consistently proven that participating in the process, telling your stories and making your voices heard makes all the difference in the world.

Merchandise Being Sold with Offensive “R-Word” Language

By NFXF|2016-12-13T11:16:44-05:00Dec 13, 2016|Action Alert, Advocacy|

We are incredibly proud of the swift action taken by members of our community, after discovering offensive items for sale on a few major retailers' websites. We stand with you.

Omnibus Spending Bill Increases Funds for NIH

By NFXF|2015-12-16T13:34:32-05:00Dec 16, 2015|Advocacy, Advocacy Day|

Today, Congressional leaders released the text of the omnibus spending bill that will be debated and hopefully passed before Congress adjourns for the year. The omnibus bill funds all 12 appropriations bills, including THE one [...]