The Elusive X-Factor
Patricia J. Heavren As long as I can remember, I’ve been on a journey to discover the extraordinary in the everyday world—especially extraordinary people, the home-grown “stars of life” with that elusive “X” factor. My [...]
Public Policy at Work: Abbeduto Given $3M NICHD Grant to Study Fragile X
The UC Davis MIND Institute reported on its website that a $3 million grant will allow their research team to investigate the effectiveness of testing procedures to examine the spoken language development of people with Fragile [...]
Research: Did You Grow Up in Iowa, or Know Someone Who Did?
the Neurodevelopmental Disabilities Laboratory and Northwestern University You can help us discover more about Fragile X syndrome and the FMR1 premutation! Our research team at Northwestern University is studying language and social characteristics related [...]
Researchers Reverse Fragile X Syndrome Symptoms in Adult Mice, Promising Autism Treatment
“These findings suggest a possible novel therapeutic target for the treatment of Fragile X Syndrome (FXS) — the most common inherited form of autism and intellectual disability,” said Eric Klann, a professor of neural science at New York University.
One Foot Forward: Marathoning in Honor of Two Special Christoff Guys
The Christoff and Frey families have been involved with the Fragile X community since Mitchell Christoff was diagnosed with Fragile X syndrome at age 3 back in 2002. Mitchell turns 14 in April, he enjoys [...]
Happy 60th Birthday, Robby!
Be sure to leave a comment below to wish Robby a Happy Birthday!
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.
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 [...]
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 [...]