Advocacy Day

/Advocacy Day

Advocate Your Butt Off!

Get up and join me because we're going to advocate our butts off! Maybe advocating is not actually a proven workout technique, but it will result in improvements. is not just about Fragile [...]

By | 2014-01-23T10:22:05+00:00 Jan 23, 2014|2014, Advocacy Day|Comments Off on Advocate Your Butt Off!

With Seaside and STX209 in Our Rearview Mirror, What’s Next?

The official result of the Seaside trials was that STX209 did not do what its makers thought it would. The present structure of FDA trials requires that the proponents of a new drug predict what it will do and then conduct trials to determine whether the drug delivers the predicted results. If it does not, that particular trial is deemed a failure and cannot be relied upon to make the case for formal approval of the drug.

By | 2013-10-10T17:40:08+00:00 Oct 10, 2013|Advocacy, Advocacy Day, Seaside STX209|Comments Off on With Seaside and STX209 in Our Rearview Mirror, What’s Next?

10th anniversary celebration of the NCBDDD

Jeffery Cohen, Director of Governmental Affairs and Advocacy for the National Fragile X Foundation was in Washington DC last Monday and attended the 10th anniversary celebration of the National Center on Birth Defects and Developmental [...]

By | 2011-11-07T11:48:20+00:00 Nov 7, 2011|2012, Advocacy, Advocacy Day|Comments Off on 10th anniversary celebration of the NCBDDD
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