The NFXF Blog
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.
Research finds Speed Limit of Visual Perception in Infants with FXS
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 [...]
A Thanksgiving message from Robert Miller
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 [...]
Best Cousins Make Best Buddies
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, [...]
Washington Update – ABLE Act & Budgets
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 [...]
2011 Annual Fund
Twenty-five-year-old David Inz works three jobs, has mastered public transportation and shares a residence in one of the several large apartment buildings that are home to the 35 young adults in his program. “The [...]
NFXF Introduces its new logo family and first tagline
The National Fragile X Foundation introduces its new logo family and its first tagline moving the foundation forward! The logo family stands modern, appealing and crisp. It highlights the NFXF’s human services emphasis. It provides [...]
10th anniversary celebration of the NCBDDD
Jeffery Cohen, Director of Governmental Affairs and Advocacy for the National Fragile X Foundation was in Washington DC last Monday and attended the 10th anniversary celebration of the National Center on Birth Defects and Developmental [...]
What are you thankful for?
We are working on a project and we would like to know what you are thankful for. Please complete the form below by Wednesday, November 9, 2011.
Finding Apps For Your Child
As technology moves forward, there have become increasingly more ways to help your child learn and navigate their life. You may have heard of Apple, Android, and PC apps which can be useful to that [...]
Make a Difference at Advocacy Day 2012
Advocacy Day 2012 is just around the corner. The date is March 6-7, 2012 and as in prior years training will be held on Tuesday (March 6) from 1-5pm and Congressional visits will be scheduled [...]
Self-Regulation Through the Life Span
Join the National Fragile X Foundation’s Executive Direct, Robert Miller and Coordinator of Support Services, Jayne Dixon Weber as they interview LINKS Group Leader and Fragile X parent Laureen Majeske and Developmental FX’s Tracy Stackhouse and Sarah “Mouse” Scharfenaker for a discussion on how self-regulation makes things work for Fragile X.