Advocacy Archives — National Fragile X Foundation

Provide Comments on the NIH Strategic Plan

Please provide your comments on the draft NIH Strategic Plan for Fragile X.

By Dan Whiting| 2019-06-13T08:46:21+00:00 Jun 6, 2019|Advocacy, Research|Comments Off

NFXF Testimony to House Appropriations Committee

On April 9, 2019, the National Fragile X Foundation provided testimony to support Fragile X research funding at the Centers for Disease Control and the National Institutes of Health. Below is Linda Sorensen's written testimony.

By Dan Whiting| 2019-06-03T11:09:43+00:00 Jun 3, 2019|Advocacy, Research|Comments Off

Sign-Up for In-District Congressional Meetings

Advocating for Fragile X families when members of Congress and their staff are in their home districts is key for three reasons: 1) You don't have to travel; 2) You generally have more time with them; 3) You underscore this is important to their constituents

By Dan Whiting| 2019-05-15T16:28:04+00:00 May 15, 2019|Advocacy|Comments Off

Share Your Special ‘Face of Fragile X’

Fragile X Awareness Day is July 22, 2019, and this year we want to hear from you. You're invited to share your story about someone special in your life who is living with Fragile X.

By Dany Petraska| 2019-05-03T11:25:37+00:00 May 3, 2019|Advocacy, Awareness Day|Comments Off

Fiscal Year 2020 NICHD Funding Letter

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.

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

Help Grow the Special Olympics

Even if you have never been to a Special Olympics event, you know the positive impact it has on the lives of the athletes and their loved ones. It is indescribable and hard to put into words that do it justice. You just know. It is because of this positive impact on not only those who have participated, but those who will, that we work to support and grow the Special Olympics.

By Dan Whiting| 2019-03-29T12:21:39+00:00 Mar 27, 2019|Advocacy|Comments Off

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 [...]

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

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