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

  • 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 (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
  • 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
  • Neuren Pharmaceuticals (NEU) has received approval from the US Food and Drug Administration to conduct a Phase 2 clinical trial of a drug to treat patients with fragile X syndrome (FXS), the company recently announced. The trial is expected to start before the end of 2013, and is expected to involve several sites within the . Adolescent and adult males will take part in a double‐blind, placebo‐controlled study, testing two different dose levels of NNZ‐2566. Enrollment is expected to continue through 2014, with initial results announced in the first half of 2015. The approval... » FULL ARTICLE

    Posted on October 3, 2013 | Categories : News Reports and Commentaries | 0 Comment
  • A recent study by Brenda Finucane of the Geisinger Health System and her colleagues reveals that many educators and therapists still know little about fragile X syndrome (FXS). Brenda Finucane is an NFXF Scientific & Clinical Advisory Committee member and genetic counseling consultant. The researchers surveyed 439 professionals in the field of autism to assess their knowledge and perceptions about FXS and related issues. Even though almost half had worked with at least one child diagnosed with FXS, most lacked basic knowledge about the condition and rarely accessed Fragile X-specific resources. What's more, many professionals are still unaware of... » FULL ARTICLE

    Posted on September 27, 2013 | Categories : Genetics,News Reports and Commentaries | 3 Comments
  • The gene and protein responsible for causing fragile X syndrome emerges as a leading candidate in the search for the cause of autism and maybe even schizophrenia. » FULL ARTICLE

    Posted on August 15, 2013 | Categories : News Reports and Commentaries | 8 Comments
  • New SAGE Therapeutics chief executive Jeffrey Jonas will oversee the company’s drug development program for fragile X syndrome, which last month received a grant worth up to $10 million from the National Institutes of Health. » FULL ARTICLE

    Posted on August 14, 2013 | Categories : News Reports and Commentaries | 0 Comment
  • We reached out to Elizabeth Berry-Kravis, MD, PhD member of the Scientific and Clinical Advisory Committee regarding the NIH's new Neurological Drug Development Project with SAGE Therapeutics. She says, "This funding is to develop a drug that works to increase activity at GABA-A receptors which there is some data to suggest have reduced activity in the brain of the fragile X mouse (GABA-A is different than the one arbaclofen works on which is GABA-B.) GABA-A is the receptor activated by the drug galaxonone that Dr. Randi Hagerman is conducting a trial of." » FULL ARTICLE

    Posted on August 6, 2013 | Categories : Keeping You Informed,News Reports and Commentaries | 2 Comments
  • The Waisman Center at the University of Wisconsin-Madison is recruiting boys with fragile X syndrome for a study on language development. Looking For Boys should be between 9 and 16 years of age, and speaking in at least 2-3 word phrases. Purpose The purpose of this research is to better understand how children with FXS use language. The Study Participants will complete standardized tests, a conversation language sample, as well as an autism diagnostic evaluation. Parents will complete an interview about their son’s behaviors and communication abilities. All... » FULL ARTICLE

    Posted on August 6, 2013 | Categories : Opportunities for families | 0 Comment
  • HELP EXPLORE THE ETHICAL, LEGAL AND SOCIAL IMPLICATIONS OF NEW PRENATAL GENETIC TESTS WITH THE STANFORD UNIVERSITY FORUM ON BIOMEDICAL ETHICS The INVEST forum is designed to help people deliberate over the ethical, legal and social impact of emerging technologies. The opinions you express in this forum, a project of the Stanford Center for Integration of Research on Genetics and Ethics, will be used to make informed recommendations to technology developers, policy-makers and regulators. The current scenario deals with a new technology for... » FULL ARTICLE

    Posted on August 1, 2013 | Categories : Opportunities for families | 1 Comment
  • The National Institutes of Health (NIH) has launched three projects that will focus on development of therapeutics, including one project for fragile X syndrome. "We are excited about the opportunity to apply cutting-edge science to the pursuit of novel treatments for these debilitating disorders" said Rebecca Farkas, Ph.D., program director at NIH’s National Institute of Neurological Disorders and Stroke (NINDS), Office of Translational Research. The investigator and organization for the fragile X syndrome project is: Sage Therapeutics, Cambridge, Mass. Principal Investigator: Al Robichaud, Ph.D. Disorder: Fragile X syndrome Project Summary: Fragile X syndrome... » FULL ARTICLE

    Posted on July 31, 2013 | Categories : News Reports and Commentaries | 1 Comment
  • Cognitive Training for Fragile X Syndrome We are conducting a study to determine if a computer-based and game-oriented training program will enhance the working memory skills of children and adolescents with fragile X syndrome (FXS). This paradigm is being tested as a potential intervention to improve certain cognitive and behavioral skills in FXS, such as paying attention and resisting distractions. Who can participate? Individuals with a confirmed diagnosis of FXS. Males and females, ages 8-17 years old. Where does the study take place? A qualified UC Davis staff... » FULL ARTICLE

    Posted on June 19, 2013 | Categories : Opportunities for families | 0 Comment
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