The NFXF Blog
FAQ with New NFXF CEO Tony Ferlenda
What would you like people to know about you? I've been in nonprofit leadership roles for the last 23 years — as both a volunteer, board member, and employee. Small- to mid-sized organizations with a compelling, human services mission, like the NFXF...
News from the FORWARD Project!
This project was funded by a CDC cooperative agreement with Dr. Ted Brown (#1U19DD000753-01). Disclaimer: The findings and conclusions in this report are those of the authors and do not necessarily represent the official position [...]
The NFXF Responds to Harrisburg Loss
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 [...]
Obituary: UC Davis scientist Chris Iwahashi, 58, was Dedicated to Fragile X
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 [...]
My Inspiration to Spread Awareness
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 [...]
Looking Back on the 14th Conference
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.
July 22, 2014: Today is National Fragile X Awareness Day!
Fragile X Awareness Day (and month) from 2014.
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 [...]