What a successful year for NFXF Advocates

By |2019-11-15T10:57:57-05:00Oct 11, 2019|Advocacy|

NFXF Advocates have had a very successful year! Our advocacy efforts focus on ensuring substantial federal investments in Fragile X research, policies that create opportunities for those living with Fragile X to have the best possible life, and an awareness in Congress of Fragile X. Here are some highlights of our efforts this year.

Fragile X Advocacy – August Recess Visits

By |2019-07-29T09:55:56-04:00Jul 29, 2019|Advocacy|

For the third year in a row, we are partnering with Rare Disease Legislative Advocates, a project of the EveryLife Foundation, to schedule Fragile X advocacy meetings with members of Congress and their staff during the August recess. Here is what you need to know.

Rep. Engel Raises Fragile X Awareness in Congress

By |2019-07-22T15:07:30-04:00Jul 22, 2019|Advocacy, Awareness Day|

Rep. Eliot Engel, D-NY-16, serves as the co-chair of the Fragile X Caucus in the U.S. House of Representatives. His co-chair is Rep. Chris Smith, R-NJ-4. To help raise awareness of Fragile X for National Fragile X Awareness Day, Rep. Engel had a statement. Read the full statement here.

Fiscal Year 2020 NICHD Funding Letter

By |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 |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 [...]

Supporting DOD Research for Fragile X

By |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 [...]

Fragile X Research at the DOD

By |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 [...]

Congress Passes the RAISE Act

By |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 [...]

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