On July 16, 2014, Christine Iwahashi, a research biochemist for more than 30 years at , died of recurrent breast cancer at the age of 58. Since 2001, she has dedicated her life to [...]
Taylor was born September 6, 2003. She was perfect. She met all her milestones right on time, spoke early, and knew complicated shapes like a pentagon before she even could speak. Taylor was, however, very shy [...]
When we come to this Conference, we all step out of our lives. Lives where Fragile X is a diagnosis, an abnormality that sets us apart from the norm, shoving us into a contra reality and a position of minority in our communities and even in our homes, in some cases. Yet at this Conference, our Fragile X family, our kin, our kind, our community amass in such numbers that we become the norm. For five glorious days we are what's expected; we are the center of the universe.
Fragile X Awareness Day (and month) from 2014.
The National Fragile X Foundation is pleased to announce the 2014 NFXF Conference Award winners. The following individuals are recognized for their outstanding service to the Fragile X community. Congratulations and thank you to the [...]
The 15th International Fragile X Conference is coming too....
Throughout his life, Pat has experienced many transitions. It started with his transition out of the early intervention program into preschool, then onto elementary school and into his collaborative program. After that, he transitioned to [...]
A message from the Jeffrey Cohen, NFXF interim executive director. >> I recently attended a meeting focusing on "The Future of Fragile X Public Health Research.” One of the hot topics was how the collection of public health data can improve how we measure success in clinical trials results....
In our world of parenting a child with special needs, all you have to do is say “Holland” and everyone knows you are dealing with challenging days and lost dreams. As Emily Perl Kingsley expressed [...]
"The results of genetic analysis confirm the diagnosis of Fragile X syndrome, " said the pediatrician. Years later, those words still bring me to tears. We are blessed with two sons, Nathan, 29, and Jason, 24, who both have Fragile X syndrome. For those of you who have never heard of Fragile X syndrome, it is the most common cause of inherited intellectual disability and the most common known genetic cause of autism.
July is National Fragile X Awareness Month, an extension of Fragile X Awareness Day (July 22) that was officially recognized in 2000 by Congress to increase awareness and advocacy for Fragile X.
