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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.

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.

Help Grow the Special Olympics

By |2019-03-29T12:21:39-04:00Mar 27, 2019|Advocacy|

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.

Surviving Changes in Washington

By |2019-01-03T17:53:44-05:00Jan 3, 2019|Advocacy|

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.

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