This post was written when the conference was cancelled due to COVID-19 concerns ... but now the conference is back on, and is virtual!
A special thank you to Joy and David Justus and the Friends for Fragile X for their continued support of the National Fragile X Foundation. They announced $70,000 in donations to Fragile X and Autism »
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.
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.
We know from years of feedback that the website serves as a useful and important resource for many newly diagnosed individuals and families as well as longtime members of the Fragile X community. Early in »
The National Fragile X Foundation introduces its new logo family and its first tagline moving the foundation forward! The logo family stands modern, appealing and crisp. It highlights the NFXF’s human services emphasis. It provides »