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Following are brief articles, reports, summaries, overviews and commentaries of research related to Fragile X-associated Disorders. The National Fragile X Foundation posts content only from reputable researchers or research institutions. In cases where summaries or overviews are provided, they are written for the NFXF by members of our Scientific & Clinical Advisory Committee or other members of the Fragile X research community. These are designed to acquaint the reader with the latest research information while providing a balanced assessment of its relevance to the treatment and eventual cure expected for Fragile X. Whenever possible, we will provide a link to a more detailed source of information for those who wish to understand the more technical aspects of the research findings. Commentary and opinion pieces are included whenever we feel they add to the thoughtful discussion and greater understanding of research.
It’s a breakthrough in understanding the process, but it is not yet a breakthrough for treating the condition. A new study led by Weill Cornell Medical College scientists shows that the most common genetic form of mental disability and autism occurs because of a mechanism that shuts off
Genetic disorders in children: An assessment of parental coping strategies and positive growth Following on from our earlier study of how parents disclose a diagnosis of fragile X syndrome to their children, we would like to further understand your experiences surrounding your child, including your emotional reaction and psychological well-being. In particular, we are interested in the support that you as a caregiver have available,
. . . Read More: Assessment of Parental Coping Strategies and Positive Growth
The National Fragile X Foundation is pleased to announce the 2013 recipients of The Justin Silver Award for Innovative Services. Established by the Silver Family in honor of their son Justin, these grants are awarded to innovative projects at that support historically underserved populations, giving the clinics and the families that visit them opportunities to work closer together. Brian Silver
. . . Read More: Exciting New Awards Granted!
We are searching for men who are carriers of the Fragile X premutation between the ages of 40 and 69 to participate in a longitudinal UC Davis research project, studying changes in brain and cognition associated with aging. For men who have not yet been tested, FMR1 DNA testing is completed to help determine eligibility for the study.
. . . Read More: MIND Institute Study on Men with FX Premutation
Do you have a daughter with fragile X syndrome? I am a graduate student in the Genetic Counseling Program at Brandeis University. I am seeking volunteers to participate in a qualitative research project. The goal of this study is to explore the experiences of parents of symptomatic girls with
. . . Read More: Brandeis University Looking for Girls with FXS Aged 13+
The National Institutes of Health has awarded a major grant to conduct a clinical trial on iPad Assisted Language Development. An Autism Speaks funded study reported encouraging findings on the effectiveness of using speech generating devices to encourage speaking in minimally verbal children ages 5 to 8 with autism. The findings have created excited interest
We are studying an experimental medication for fragile X syndrome in children and adolescents. We hope to learn if this experimental medication is safe, how well your body manages the medication (tolerability), how much medication is in your body (pharmacokinetics) and if it works on symptoms of Fragile X Syndrome. Children and adolescents with Fragile X Syndrome (between 5 and 17 years of age) may participate. Costs for travel,
Contact: Mark Derewicz firstname.lastname@example.org (919) 923-0959 University of North Carolina Health Care CHAPEL HILL, N.C. – When you experience something, neurons in the brain send chemical signals called neurotransmitters across synapses to receptors on other neurons. How well that process unfolds determines how you comprehend the experience and what behaviors might follow. In people with fragile X syndrome, a third of whom are eventually diagnosed with Autism Spectrum Disorder, that process is severely hindered,
Scientists at UMass Medical School have shown that knocking out a gene important for messenger RNA (mRNA) translation in neurons restores memory deficits and reduces behavioral symptoms in a mouse model of a prevalent human neurological disease. This provides researchers with a new
The Carolina Institute for Developmental Disabilities (CIDD) at the University of North Carolina at Chapel Hill and the Center for Interdisciplinary Brain Sciences Research (CIBSR) at Stanford University would like to inform you of an exciting new research project involving families who have a child diagnosed with fragile X