The NFXF Blog
Coping Skills and Fragile X Syndrome: A Response from Dr. Cheryl Klaiman
"Adaptive skills as measured in the study worsen relative to typical peers,” said Dr. Berry-Kravis. “They do not actually get worse in that the children with Fragile X syndrome are not regressing or losing skills.” [...]
You Made Awareness Month Happen!
Our top Let 'Em Know team, New Jersey Fragile X Community Support Group National Fragile X Awareness Month is a group effort. We prepare each July to unite and keep our communities informed [...]
FMR1 Gray Zone Allele: What Do We Know About It?
This “gray zone” range was defined in part due to its likelihood of expanding into the full mutation in the next generation. Most people possess an allele that typically contains ~30 CGG repeats.
IL: Lizzie’s Open House
Lizzie's 10th Annual Open House Date: September 20, 2014 Time: 10:00 AM - 03:00 PM Location: Geneva History Center113 S. 3rd Street Geneva, IL 60134 Hosts: Nancy Reilly Details Participating Vendors Discovery Toys [...]
IL: Lizzie's Open House
Lizzie's 10th Annual Open House Date: September 20, 2014 Time: 10:00 AM - 03:00 PM Location: Geneva History Center113 S. 3rd Street Geneva, IL 60134 Hosts: Nancy Reilly Details Participating Vendors Discovery Toys [...]
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.