I was honored to have been invited to represent the Fragile X community and the NFXF at the recent meeting sponsored by Neuren Pharmaceuticals, in which they shared some very encouraging news regarding their Phase [...]
This summer, the NFXF funded four summer student research fellowships at $2500 each through the Summer Student Fellowship Research Fund. Since its inception in 2000, the fund has awarded $225,000 to 90 students focused on [...]
This summer, the NFXF will fund four summer student research fellowships at $2,500 each through the Summer Fellowship Research Fund. Since its inception in 2000, the fund has awarded $225,000 to 90 students all focused on advancing [...]
Neuroimmunology is a relatively new field at the intersection of neuroscience and immunology. Its purpose is to describe how immune function affects brain development and function, and how signaling between cells in the brain affect levels [...]
A study summary of: A Comparison of Family Financial and Employment Impacts of Fragile X Syndrome, Autism Spectrum Disorders, and Intellectual Disability The full study is available in Research and Developmental Disabilities, July 2014. The [...]
It's beginning to feel like both the scientific world and the rest of the world are coming around to the idea (a fact, really) that Fragile X is about a lot more than just Fragile [...]
A message from the Jeffrey Cohen, NFXF interim executive director. >> I recently attended a meeting focusing on "The Future of Fragile X Public Health Research.” One of the hot topics was how the collection of public health data can improve how we measure success in clinical trials results....
A few months ago we asked the parents of children and adult offspring with Fragile X syndrome (FXS) in the National Fragile X Foundation (NFXF) community to answer a few questions. We asked what parents [...]
A new study reveals that increasing CGG repeat length in the premutation range (55–200 repeats) doesn’t necessarily put one at increasing risk of psychiatric disorders — the relationship is more complex.
Novartis Announces Results of Mavoglurant (mGluR5) (AFQ056) Clinical Trials and the Conclusion of the Long-Term Extension Study
Earlier this month Novartis released results of the Phase IIb/III studies with mavoglurant (AFQ056) in adolescents with Fragile X syndrome (FXS). The trial results from the study of adults were released late last year. Both studies did not meet [...]
Progressive Neurodegenerative Disorder (FXTAS) Linked to R-loop Formation, UC Davis Researchers Find
Researchers at UC Davis have identified a new feature of the genetic mutation responsible for the progressive neurodegenerative disorder Fragile X-associated tremor/ataxia syndrome (FXTAS) — the formation of “R-loops,” which they believe may be associated with the disorder’s neurological symptoms, such as tremors, lack of balance, features of Parkinsonism and cognitive decline.
The very earliest signs of a debilitating neurodegenerative disorder, in which physical symptoms are not apparent until the fifth decade of life, are detectable in individuals as young as 30 years old using a new, [...]
Family adaptation is the process by which parents and other family members adjust, accommodate, or transform their roles and responsibilities to better meet current demands. All families must change and adapt over time, but this [...]