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

  • 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
  • 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 approach to study and potentially treat fragile X syndrome (FXS). The results were published in Nature Medicine on Oct 20, and they suggest the main... » FULL ARTICLE

    Posted on October 28, 2013 | Categories : News Reports and Commentaries | 4 Comments
  • 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 syndrome. This innovative, five-year, NIMH funded research project was awarded $5 million in funding in the fall of 2012 and the study is now underway. The... » FULL ARTICLE

    Posted on October 15, 2013 | Categories : Opportunities for families | 0 Comment
  • We invite your child with fragile X syndrome to join in the foXtail study This invitation tells you a more about the study We want to see if a new medication, RO4917523, helps people with fragile X syndrome Have a talk about the foXtail study with your family/child’s caregivers and child It is your and your child’s choice if you want your child to take part in this study Please consider participating Please contact us if you want to ask questions Invitation We are inviting children ages 5 to 8 years old with fragile X syndrome... » FULL ARTICLE

    Posted on October 14, 2013 | Categories : Opportunities for families | 0 Comment
  • We are actively recruiting children diagnosed with FXS between 24-60 months old to participate in a groundbreaking study! We have preliminary evidence that sertraline, a selective serotonin re-uptake inhibitor (SSRI) is beneficial for language development in young children with FXS. It is our hope that this study will lead to a better understanding of the benefits of early treatment with sertraline for young children with FXS and inform future treatment and interventions. Who can participate? Children between the ages of 24-60 months of age diagnosed... » FULL ARTICLE

    Posted on October 14, 2013 | Categories : Opportunities for families | 0 Comment
  • The Kosair Charities Pediatric Clinical Research Unit at the University of Louisville invites adolescents between the ages of 14 and 17 with fragile X syndrome to take part in a research study for a medication that is being developed to treat the symptoms of fragile X syndrome. We hope to learn more about its safety, how well your body manages it (tolerability), and how much medicine is in your body (pharmacokinetics). This study is being sponsored (organized and paid for)... » FULL ARTICLE

    Posted on October 14, 2013 | Categories : Opportunities for families | 0 Comment
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