The NFXF Blog
Congressman Harper Re-Introduces the TEAM Act
The three bills which comprised the TEAM Act began and finished the 112th Congress without ever making it to a vote. The package of bills serve the dual function of promoting the training and employment [...]
Merck Fund Announces Fragile X Research Grants
The NFXF is honored to have been asked by the John Merck Fund to help share the exciting news about two new million-dollar grants for treatment related research in Fragile X syndrome. Both grants go [...]
CIDD at UNC Chapel Hill: Looking for Infants with FXS Between 0-6 Months of Age
University of North Carolina at Chapel Hill and Washington University in St. Louis The Carolina Institute for Developmental Disabilities (CIDD) at the University of North Carolina at Chapel Hill would like to inform you [...]
Collaboration to Promote Self-Determination Criticizes ESEA Waivers
The following is about a topic important to all parents of children with FXS, including those who are now adults or soon to become adults. The NFXF continues to provide leadership on issues related to [...]
Reading, Writing, and Behavior?
Best practice for those affected with FXS means providing a learning environment that allows them to access the curriculum in ways that minimize their disruptive behaviors.
LINKS: Families Were Bowled Over With Excitement & More!
The LINKS group held its Third Family Bowling Event on January 26—intentionally planned in between the football conference playoffs and the Superbowl! Organized by LINKS leader Missy Zolecki, it brought together about 150 people from [...]
Research: Seeking Fragile X Premutation Carriers for a Study of Cognition
UC Davis MIND Institute Fragile X Spectrum as a Model to Explore Neurogenetic Mechanisms of Cognitive Dysfunction Funded by the National Institutes of Health Approved by the University of California, Davis Institutional Review Board [...]
Health Care Reform’s Impact on People with Disabilities
We’ve all heard about the Affordable Care Act. (Often referred to as “Obamacare.”) What will it mean for individuals with Fragile X syndrome or their families? What about those with FXTAS or FXPOI? Will it [...]
Research: Study for Medication at University of Louisville
Kosair Charities Pediatric Clinical Research Unit at the University of Louisville Do you have Fragile X syndrome? Are you the parent or caregiver of a person with Fragile X syndrome, or know someone who [...]
Thank You, 2012 Fundraisers!
We hope your new year is off to a great start! This month we will take a moment to recognize the many individuals, families, students and LINKS groups who took it upon themselves to raise [...]
LINKS Gets Into Gear for the New Year!
2012 was the most active year ever in the LINKS Support Network program, with everything from monthly Saturday gatherings for coffee to statewide awareness walks dotting the calendar. In addition to actively participating at the International Conference, many LINKS groups held local educational conferences for families and professionals in their communities. We also saw a lot of growth in the LINKS network, with eight new groups forming and two groups changing leadership. All this activity helped us reach out to more families across the U.S. than ever before.
A Fond Farewell to the FX Community
My first Fragile X case was in graduate school in 1984. A young man, about to be married, had a brother with Fragile X syndrome, and he wanted genetic counseling prior to his wedding. The first rumblings of "transmitting males" were arising so we imparted on him a small risk to be some sort of carrier, with no symptoms, and to be at risk for grandchildren with FXS. Even then, that was pretty advanced stuff, straying from the usual X-linked inheritance that previously reassured unaffected males that they could not pass on the disorder.