The NFXF Blog
Ground-breaking Genetic Research Gives Hope for Potential Treatment of Autism’s Core Symptoms
As scientists uncover the precise links between autism and the Fragile X gene, potential treatments to reverse many of the core symptoms of both autism and Fragile X syndrome (FXS) are moving closer to reality.
Is Your Child’s Behavior a Manifestation of Their Disability?
Before school authorities consider suspension and possible expulsion, they need to determine whether threatening someone may have been the only way that the person with Fragile X syndrome could express the gravity of their personal discomfort.
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 [...]