Keeping You Informed

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Forward, Together

By |2014-09-15T10:03:45-04:00Sep 15, 2014|Keeping You Informed|

It is my honor and privilege to join the Fragile X community as the new CEO of the National Fragile X Foundation. Since my arrival, I have had the opportunity to witness, first-hand, what I ...

The NFXF Responds to Harrisburg Loss

By |2014-08-04T14:24:29-04:00Aug 4, 2014|Keeping You Informed|

The National Fragile X Foundation is saddened to learn of the death of Jarrod Tutko Jr., an 8-year-old boy from Harrisburg, Penn., who was living with Fragile X syndrome. The Fragile X community mourns the ...

NFXF Founder Receives Distinguished Scholarly Public Service Award

By |2014-05-01T12:25:32-04:00May 1, 2014|FXCRC and Clinics, Keeping You Informed|

"I can think of no one more deserving of this honor. Although a physician and scientist, Randi is a public servant in the true sense of the title. Her passion to bring positive change to the lives of individuals and families impacted by Fragile X and autism sets the bar. We at the National Fragile X Foundation are proud to carry on the work that Randi started 30 years ago when she established the NFXF. The families we serve sleep better at night knowing that Randi is on the job. We offer our most heartfelt congratulations and thanks to Randi on the occasion of this well deserved award." said Jeffrey Cohen, NFXF interim executive director.

UC Davis MIND Institute Joins Ranks of Elite US Neurodevelopmental Centers

By |2014-03-12T13:01:15-04:00Mar 12, 2014|FXCRC and Clinics, Keeping You Informed|

Congratulations to the UC Davis MIND Institute—a member of the Fragile X Clinical & Research Consortium— for being named an Intellectual and Developmental Disabilities Research Center. Only a handful of neurodevelopmental centers hold that distinction, and we’re proud to call them our friends and colleagues in the Fragile X community.

UC Davis MIND Institute launches "Colombia Project of Hope"

By |2014-02-27T08:39:22-05:00Feb 27, 2014|FXCRC and Clinics, Keeping You Informed|

In November 2013 Fragile X researchers led by MIND Institute Medical Director Randi Hagerman visited the Valle del Cauca District and the small town of Ricaurte, Colombia, which for years has been known to have a very high prevalence of individuals with intellectual disability and more recently this was found to be Fragile X syndrome. The NFXF was along on this journey of discovery.

Fragile X and the NFXF, Courtesy of the Giving Library

By |2013-11-26T09:00:09-05:00Nov 26, 2013|Keeping You Informed|

I'm very excited to share this short video I recorded recently thanks to the generosity of our friends at the Giving Library. In it, I talk about how Fragile X affects our lives and the ways the National Fragile X Foundation has helped make a world of difference to many families, including mine. I hope you'll take the time to watch it and share it with your family and friends.

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