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What a successful year for NFXF Advocates

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.

By | 2019-11-15T10:57:57+00:00 Oct 11, 2019|Advocacy|Comments Off on What a successful year for NFXF Advocates

Fragile X Advocacy – August Recess Visits

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.

By | 2019-07-29T09:55:56+00:00 Jul 29, 2019|Advocacy|Comments Off on Fragile X Advocacy – August Recess Visits

Rep. Engel Raises Fragile X Awareness in Congress

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.

By | 2019-07-22T15:07:30+00:00 Jul 22, 2019|Advocacy, Awareness Day|Comments Off on Rep. Engel Raises Fragile X Awareness in Congress

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 | 2019-05-15T16:28:04+00:00 May 15, 2019|Advocacy|Comments Off on Sign-Up for In-District Congressional Meetings

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 | 2019-04-30T14:18:37+00:00 Apr 30, 2019|Advocacy, Research|Comments Off on Fiscal Year 2020 NICHD Funding Letter

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 | 2019-03-29T12:21:39+00:00 Mar 27, 2019|Advocacy|Comments Off on Help Grow the Special Olympics

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 | 2019-02-28T13:51:49+00:00 Feb 28, 2019|Advocacy|Comments Off on NFXF Advocacy Day – Another Success

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 | 2019-01-03T17:53:44+00:00 Jan 3, 2019|Advocacy|Comments Off on Surviving Changes in Washington

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
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