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 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
  • The Center for Interdisciplinary Brain Sciences Research (CIBSR) at Stanford University would like to invite you to take part in an exciting new research opportunity available to families who have an adolescent child with fragile X syndrome. We are conducting a study to evaluate how environmental and biological factors affect the display of severe problem behavior (e.g., aggression, self-injury, etc.) in adolescents with fragile X syndrome. The lead investigator of this study is Scott Hall, PhD, BCBA-D. Eligible participants will travel to Stanford for a comprehensive behavioral assessment... » FULL ARTICLE

    Posted on June 13, 2013 | Categories : Opportunities for families | 3 Comments
  • If you have a son or daughter with fragile X syndrome between 6 and 23 years of age, you and your child are invited to participate in a research study being conducted by Dr. Leonard Abbeduto at the MIND Institute University of California, Davis, and four other sites across the United States. The goal of this study is to learn more about how samples of spoken language can be used to measure change over time in the spoken language, problem solving, and... » FULL ARTICLE

    Posted on June 12, 2013 | Categories : Opportunities for families | 6 Comments
  • Dear Member of the Fragile X Community, We are contacting you to let you know about a research program at Vanderbilt University. This program studies new treatments for individuals with fragile X syndrome. The purpose of the Fragile X Treatment Research Program is to find out if certain medications are helpful for people with fragile X syndrome. These studies are based upon research findings in animals suggesting these medications may improve problem... » FULL ARTICLE

    Posted on June 11, 2013 | Categories : Opportunities for families | 0 Comment
  • To our Fragile X family: Many of you by now have heard the news that Seaside Therapeutics has decided to end their extension of the trial medication known as Arbaclofen (STX209). The NFXF Board of Directors and all those within the National Fragile X Foundation share your heartfelt concern of the impact this decision will have on your family or of those you may know. While this may be a difficult time for many, it is important for us to remember there has never been more of a reason to remain optimistic. There are many new medication targets under investigation and researchers... » FULL ARTICLE

    Posted on May 18, 2013 | Categories : News Reports and Commentaries,Seaside STX209 | 6 Comments
  • Late yesterday afternoon the NFXF, along with all of the study locations, was contacted by Seaside Therapeutics and informed that the “Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of STX209 (arbaclofen) in Subjects with Fragile X Syndrome] is being terminated. The closure of the study is due to resource limitations at Seaside Therapeutics, Inc., and is not related to any known safety issue in patients taking the drug.” Everyone who is participating in this study will be contacted by your individual clinic. Please remember there... » FULL ARTICLE

  • Join the Conversation for Change: Help shape federal agency strategies for helping youth and young adults with disabilities successfully transition from school to work Overview To examine the impact of existing federal regulations and legislation on the successful transition from school to work of youth with disabilities, a free, public online dialogue will be held May 13-27, 2013. The US Departments of Labor, Education, Health and Human Services and the Social Security Administration will host the event and invite policymakers, service providers, advocates, youth with disabilities and others to join this online dialogue to improve transition outcomes for youth with disabilities. Why is... » FULL ARTICLE

    Posted on May 8, 2013 | Categories : Opportunities for families | 0 Comment
  • Got Fragile X? Participate in a New Clinical Trial for Children with Fragile X Syndrome! Kennedy Krieger Institute is looking for children, ages 5 through 13 years, with fragile X syndrome to participate in a research study. Purpose The purpose of this study is to determine if an investigational drug is a safe and effective treatment for symptoms associated with fragile X syndrome. Procedures Participation in this study will require up to 9 visits (each lasting 2-10 hours) to the Kennedy Krieger Institute in Baltimore, MD... » FULL ARTICLE

    Posted on May 3, 2013 | Categories : Opportunities for families | 1 Comment
  • Sertraline Study - Clinical Trials 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 reuptake inhibitor (SSRI) is beneficial for langauge 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... » FULL ARTICLE

    Posted on May 2, 2013 | Categories : Opportunities for families | 1 Comment
  • The NFXF was excited to read this announcement from the University of Michigan Health System. There are a number of dedicated scientists and clinicians working on FXTAS, however new treatments have been slower in coming than for fragile X syndrome. » FULL ARTICLE

    Posted on April 22, 2013 | Categories : FXTAS,In the News,News Reports and Commentaries | 11 Comments
  • The UC Davis MIND Institute reported on its website that a $3 million grant will allow their research team to investigate the effectiveness of testing procedures to examine the spoken language development of people with fragile X syndrome and people with Down syndrome. The grant was awarded by the Eunice Kennedy Shriver National Institute of Child Health and the Human Development of the National Institutes of Health. The study will evaluate the reliability and sensitivity of a language-evaluation procedure that Abbeduto has pioneered for... » FULL ARTICLE

    Posted on March 27, 2013 | Categories : 2013,Advocacy,News Reports and Commentaries | 6 Comments
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