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, [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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.
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.
Abstract Fragile X syndrome is the most common cause of inherited intellectual impairment and the most common single-gene cause of autism. Individuals with Fragile X syndrome present with a neurobehavioural phenotype that includes selective deficits [...]
Thanksgiving, of course, always reminds me how much I have to be thankful for: family, friends, colleagues, and the incredibly dedicated community of Fragile X professionals. This year, I especially want to single out all [...]
By Gail Heyman It was an exciting weekend in Washington, DC when Scott Heyman joined his cousin, Allison Gordon, for the 2011 Audi Best Buddies Challenge. They participated in the 100K bike ride, [...]
Despite the fact that we're now 7 weeks into fiscal year 2012 the budget for 2012 that impacts FX research and programming (CDC, NIH, DOD) remains unfinished. There was a slim chance that it would [...]
