News, Reports and Commentaries

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.

Latest News

  • Alcobra Ltd will be conducting a clinical trial of Metadoxine Extended Release (MDX) in adults and adolescents, 15 to 55 years old, with fragile X syndrome. The planned Phase IIb MDX clinical trial will be a multi-center, randomized, placebo-controlled study, conducted primarily in the US. The study is supported by positive data collected from multiple earlier animal studies using metadoxine. Results from these studies demonstrated significant improvement in behavioral and cognitive outcomes in mice based on testing and performance of memory, learning, and social interaction. » FULL ARTICLE

    Posted on May 21, 2014 | Categories : Opportunities for families | 0 Comment
  • 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 the primary endpoint of showing significant improvement in abnormal behaviors compared to placebo. Earlier today the company announced that it will no longer continue development of mavoglurant in FXS, nor will it continue the long-term extension studies of mavoglurant in FXS. The company did however make clear that given the significant unmet medical... » FULL ARTICLE

    Posted on April 24, 2014 | Categories : News Reports and Commentaries,Novartis AFQ056 | 0 Comment
  • 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. » FULL ARTICLE

    Posted on April 18, 2014 | Categories : News Reports and Commentaries | 1 Comment
  • We are recruiting a small group of mothers and their children with fragile X syndrome, between the ages of 10- and 17-years, to participate in a pilot study of a parent-implemented language intervention. The goal of this project is to teach each mother strategies which can be used to support spoken language development in their child with fragile X syndrome. » FULL ARTICLE

    Posted on April 15, 2014 | Categories : Opportunities for families | 1 Comment
  • 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, sophisticated type of neuroimaging, researchers at UC Davis, the University of Illinois and UCLA have found. People with the condition — fragile X-associated tremor/ataxia syndrome (FXTAS) — experience tremors, poor balance, cognitive impairments and Parkinsonism. The genetic condition results from a mutation in the fragile X mental retardation gene... » FULL ARTICLE

    Posted on April 7, 2014 | Categories : FXTAS,News Reports and Commentaries | 0 Comment
  • 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 is especially true for families who have a child with fragile X syndrome (FXS). For these families, adaptation begins with the diagnosis and continues throughout their child’s life.{{1}} {{2}} {{3}} {{4}} {{5}} Adaptation is a complex process and involves changes on multiple levels. Ultimately, positive adaptation... » FULL ARTICLE

    Posted on March 28, 2014 | Categories : News Reports and Commentaries | 0 Comment
  • If you have a son with fragile X syndrome or a son with autism between 15 and 22 years of age, you and your son are invited to participate in a research study being conducted by Dr. Leonard Abbeduto at the MIND Institute University of California, Davis. The project is a collaborative effort with researchers at the University of South Carolina and at the New York State Institute for Basic Research on Developmental Disabilities. The goals of this study are to learn... » FULL ARTICLE

    Posted on March 10, 2014 | Categories : Opportunities for families | 0 Comment
  • 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 the gene associated with the disease. The findings, published today in Science, also show that a drug that blocks this silencing mechanism can prevent... » FULL ARTICLE

    Posted on February 27, 2014 | Categories : Keeping You Informed,News Reports and Commentaries | 0 Comment
  • 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, and how this helped you to cope with the experience. This is a questionnaire that you can do online. You can do this study even if... » FULL ARTICLE

    Posted on February 26, 2014 | Categories : Opportunities for families | 0 Comment
  • 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 currently serves on the NFXF . Here are the 2013 recipients of the Justin Silver Award for Innovative Services: Lower Rio Grande Valley Project: $7,500 Grant ... » FULL ARTICLE

    Posted on January 28, 2014 | Categories : FXCRC and Clinics,News Reports and Commentaries | 5 Comments
  • 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. » FULL ARTICLE

    Posted on December 17, 2013 | Categories : Opportunities for families | 1 Comment
  • 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 FMR1 full mutations who have discussed the diagnosis with their daughter. Only parents who have gone through this process, like you, have this knowledge. It... » FULL ARTICLE

    Posted on December 16, 2013 | Categories : Opportunities for families | 3 Comments
  • 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 partly because they counter the belief that if children do not acquire language by age 5, they probably never will. Recruitment is currently underway to enroll... » FULL ARTICLE

    Posted on November 20, 2013 | Categories : News Reports and Commentaries | 8 Comments
  • 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, accommodations, and food for clinic visits will be reimbursed. Please contact your local research center to receive more information or to ask any questions. A list... » FULL ARTICLE

    Posted on November 14, 2013 | Categories : Opportunities for families | 0 Comment
  • Contact: Mark Derewicz mark.derewicz@unch.unc.edu (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, leading to intellectual impairments and abnormal behaviors. C.J. Malanga, MD,... » FULL ARTICLE

    Posted on November 13, 2013 | Categories : News Reports and Commentaries | 1 Comment
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