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Annoucements

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21st Century Cures Act Demonstrates Bi-Partisan Spirit

By |2016-12-09T09:24:01-05:00Dec 9, 2016|Annoucements, Foundation|

Closely following its passage (392-26 on Nov. 30) in the House of Representatives, the U.S. Senate took up the 21st Century Cures Act and enacted the law by an equally impressive margin (94-5) vote. The law’s next stop is President Obama’s desk, and the President has already made clear his support for the bill and his intent to sign it. Passage will mean nearly $5 billion of new funding for the National Institutes of Health (NIH) and $500 million for the Food and Drug Administration (FDA), along with a plethora of policy provisions that will bolster medical research.

A Fond Farewell to the FX Community

By |2012-12-31T08:06:51-05:00Dec 31, 2012|Annoucements|

My first Fragile X case was in graduate school in 1984. A young man, about to be married, had a brother with Fragile X syndrome, and he wanted genetic counseling prior to his wedding. The first rumblings of "transmitting males" were arising so we imparted on him a small risk to be some sort of carrier, with no symptoms, and to be at risk for grandchildren with FXS. Even then, that was pretty advanced stuff, straying from the usual X-linked inheritance that previously reassured unaffected males that they could not pass on the disorder.

Welcome Sharon Kidd to our team

By |2011-12-19T17:00:07-05:00Dec 19, 2011|Annoucements|

We'd like to welcome Sharon Kidd, PhD to our team at the NFXF. Sharon joined us a few weeks ago and will serve as the National Coordinator of the Fragile X Clinical & Research Consortium's ...

Our Fragile X World adds over $7,000 to NFXF

By |2011-09-29T13:25:40-04:00Sep 29, 2011|2012, Annoucements|

We've previously announced Our Fragile X World through our social media accounts, our Fragile Xtras e-newsletter and the NFXF Quarterly. Our Fragile X World is a community of families and researchers dedicated to using survey ...