The NFXF Blog
2014 Conference Award Winners
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 [...]
15th International Fragile X Conference is coming too….
The 15th International Fragile X Conference is coming too....
Transitions Are Not Always Planned
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 [...]
The Future of Fragile X Public Health Research
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....
The Garber Family Story
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 [...]
My Boys and Fragile X
"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.
National Fragile X Foundation Announces Fragile X Awareness Month 2014
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.
Finding Hope After Our Diagnosis
Our only child, Kenny, was diagnosed with Fragile X syndrome (FXS) at the age of four. When this happened our family was not only at a loss for words, but at a loss for what we could do for our son and for his future.
Spread the Word to End the Word
In Girl Scouts, there are three different awards you can receive, Bronze, Silver, and Gold. As a member of Girl Scouting, I have received all three awards. The one I feel most proud of is my Gold Award because what I did to earn that award made a real difference to my brother and to my community. I received that award because I organized a “Spread the Word to End the Word” day at my high school, Hopkins Academy.
Parent Survey Results: Insights To Appear in Research Grant
A few months ago we asked the parents of children and adult offspring with Fragile X syndrome (FXS) in the National Fragile X Foundation (NFXF) community to answer a few questions. We asked what parents [...]
Novartis Trial and the Morgan Family Heartbreak
As I contemplated the end of the I decided to list the accomplishments and changes that we have witnessed in our son, Dan, since its inception two years and nine months ago. The [...]
Continued Success of the FORWARD Project
New York State Institute for Basic Research (IBR) and the Fragile X Clinical and Research Consortium (FXCRC) Continue To Make Great Strides with the CDC supported Fragile X Online Registry With Accessible Research Database (FORWARD) [...]