The NFXF Blog
Welcome to Your New National Fragile X Foundation Website!
We know from years of feedback that the website serves as a useful and important resource for many newly diagnosed individuals and families as well as longtime members of the Fragile X community. Early in [...]
Oh No They Didn’t! NFXF Launches New Website, Logo and First Brand Tagline
FOR IMMEDIATE RELEASE Contact: Robert Miller (925) 938-9300 robmiller@fragilex.org www.fragilex.org Walnut Creek, Calif. — The National Fragile X Foundation, the world’s leading authority on Fragile X syndrome, launched its new website today. The site, fragilex.org, [...]
Study of Fragile X Treatment Preferences
RTI International RTI International{{1}}, an independent, nonprofit research organization, is conducting an important study. The purpose of this study is to better understand the views of people who provide care to a son or [...]
The Flu and Fragile X Syndrome
MMWR Article: Severe Influenza Among Children and Young Adults with Neurologic and Neurodevelopmental Conditions — Ohio, 2011 CDC published a new report in MMWR: “Severe Influenza Among Children and Young Adults with Neurologic and Neurodevelopmental [...]
The 2012 Federal Budget: What it Means for Fragile X Programs and Funding
Good news! The 2012 federal budget process has finally concluded, and Fragile X has emerged from the process with federal funding and programs intact. This was only because of the relationships we’ve nurtured and grown [...]
Focus on Fundraisers: December
2011 Annual Fund Since 1984, the NFXF has made it a goal to always be looking forward. Whether we are providing support and information for a newly diagnosed family, advocating each year for federal funding [...]
Help us reach our goal!
Thanks to our generous and loyal supporters, we are currently ahead of schedule to reach our goal for the 2011 Annual Fund! If you have not yet donated, you can help us reach 2012 [...]
Introducing the Keeping All Students Safe Act
Senator Tom Harkin (D-IA), Chairman of the Senate Health, Education, Labor and Pensions Committee, introduced the Keeping All Students Safe Act, a bill to protect students from ineffective and dangerous seclusion and restraint practices in [...]
Welcome Sharon Kidd to our team
We'd like to welcome Sharon Kidd, PhD to our team at the NFXF. Sharon joined us a few weeks ago and will serve as the National Coordinator of the Fragile X Clinical & Research Consortium's [...]
Transitioning Forward (Part 1 of 2)
In Part One of our two-part series, we interview two different parents whose children are moving forward in their lives. Melissa Street's son Jesse is transitioning into a typical classroom, and Carolyn Jackson's two daughters [...]
Study recruitment: Parent Mediated Language Intervention for Young Children with FXS
Young children with Fragile X syndrome and their biological mothers are being recruited to participate in a language intervention study conducted by the research team of Dr. Leonard Abbeduto at the MIND Institute, University of California-Davis. Children should be between 2- and 6-years of age and have little spoken language. The project will teach mothers to interact with their children in ways that support communication and language development.
Life: A Series of Transitions
I realized when my son Ian was just 4 years old that he had difficulty with transitions. I had never thought about transitions being difficult. You just did them - you didn’t think about it. Well, with Ian, I started thinking about them. I still do to this day. I quickly learned I had to allow plenty of time for everything, arrive early to events, set up schedules and routines, take time for transitioning back home—and that was just the beginning.