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

  • Language is critical in much of daily life. Making friends, learning in school and holding down a job, all require language. For people with more limited language, like so many with fragile X syndrome (FXS), researchers and clinicians are trying to figure out ways of improving language so that inclusion in more of life’s activities will be possible. » FULL ARTICLE

    Posted on October 19, 2016 | Categories : Research | Comments Off on Language Challenges and Language Possibilities for Fragile X Syndrome
  • The purpose of this study is to explore parent perceptions of clinician-client relationships in speech-language treatment for children. We believe that the development of collaborative working relationships between speech-language pathologists, children receiving treatment, and their parents are important aspects of the treatment process. We are working to develop tools to accurately measure the strength of these relationships. » FULL ARTICLE

    Posted on September 12, 2016 | Categories : Opportunities for families,Research | Comments Off on Parent Perspectives on Rapport in Speech-Language Treatment for Children
  • Stanford School of Medicine is seeking boys, ages three and ten years, to participate in a study evaluating behavioral treatments for disruptive behaviors. » FULL ARTICLE

    Posted on September 8, 2016 | Categories : Opportunities for families | 9 Comments
  • If your child is between six and 17 years of age, Georgia State University is interested in studying their walking pattern and bone mineral density. » FULL ARTICLE

    Posted on August 1, 2016 | Categories : Opportunities for families | Comments Off on Research Study of Children with Fragile X Syndrome at Georgia State University
  • The Translational Applied Behavior Analysis Laboratory at Stanford University is seeking boys with FXS to participate in an innovative new research study involving a brief social skills intervention and MRI brain imaging. » FULL ARTICLE

    Posted on June 15, 2016 | Categories : Opportunities for families,Research | 3 Comments
  • The focus of this research is on understanding how couples communicate about genetic testing in regards to their children and how they decide about future children knowing there is a potential or actual genetic risk. » FULL ARTICLE

    Posted on June 9, 2016 | Categories : Opportunities for families,Research | Comments Off on Research: Experiences and Decision-Making Processes
  • Johns Hopkins School of Public Health and the National Human Genome Research Institute invites you to participate in a research study on how parents of people with fragile X syndrome (FXS) experience and make decisions about FXS drug development clinical trials. The goal of this research study is to explore the personal story of parents who have experience with FXS drug development clinical trials. » FULL ARTICLE

    Posted on June 2, 2016 | Categories : Opportunities for families,Research | Comments Off on Research Opportunity: National Institutes of Health Research into Clinical Trial Experiences
  • Each year, the National Fragile X Foundation funds one or more summer student research fellowships at $2500 each through the Rosen/Weingarden Summer Fellowship Research Fund. The student’s work can be in the area of fragile X syndrome (FXS), fragile X-associated tremor/ataxia syndrome (FXTAS) or fragile X-associated primary ovarian insufficiency (FXPOI). This award is meant to introduce undergraduate students, or students in professional training programs, to research in the Fragile X field, by providing funding for a summer project. We understand the importance of investing in the future of Fragile X, and this award is part of our commitment to fostering » FULL ARTICLE

    Posted on June 1, 2016 | Categories : Research,Summer Student Fellowship | Comments Off on William & Enid Rosen Summer Student Fellowship 2016 Awards
  • Little is known about the early psychosocial and family development of young children with neurodevelopmental disorders. The goal of this study is to partner with families affected by these conditions to better understand children’s individualized strengths and needs. » FULL ARTICLE

    Posted on May 6, 2016 | Categories : Opportunities for families,Research | Comments Off on Purdue University Phenotype Survey
  • Now Recruiting Research Participants: Combining Lovastatin and a Parent-Implemented Language Intervention in a Multimodal Treatment for fragile X syndrome We invite you to take part in a research study to test the efficacy of a multimodal treatment comprised of the medication Lovastatin or placebo, and a Parent-Implemented Language Intervention (PILI) in children and adolescents with FXS. Who Can Participate? Children and adolescents between the ages of 10-17 diagnosed with fragile X syndrome. Participants must be able to speak in at least two to three word phrases... » FULL ARTICLE

    Posted on April 20, 2016 | Categories : Research | 2 Comments
  • In 2005, the UC Davis MIND Institute and the National Fragile X Foundation (NFXF) were contacted by Sergio Villada of the Special Kids Foundation in Florida. Sergio was in Colombia making a documentary about a relative with fragile X syndrome (FXS). While filming, he had heard of a small agricultural town called Ricaurte that had a high preponderance of people with intellectual disability. Sergio also knew researchers from the Universidad del Valle had done preliminary cytogenetic studies to document Fragile X in several families in Colombia. As a result of Sergio’s efforts, in the fall of 2013, Dr. Randi Hagerman » FULL ARTICLE

    Posted on April 15, 2016 | Categories : Research | 11 Comments
  • If you have a son with fragile X syndrome between 36 and 66 months of age, you and your child are invited to participate in a research study being conducted by Dr. Angela Thurman from the Laboratory on Language Development in Neurodevelopmental Disorders at the MIND Institute University of California, Davis. Study Goals The goal of this study is to learn more about the factors influencing language learning in boys with fragile X syndrome. In the future, it is possible that this information will help us... » FULL ARTICLE

    Posted on January 11, 2016 | Categories : Opportunities for families | 3 Comments
  • The last two years have been tough for Fragile X (FX) research. Many of us in the greater Fragile X community believed that drugs capable of reversing the core symptoms of FX were sitting on the shelf, waiting for consumers eager to improve the quality of their lives. It seemed that all we needed was to complete the drug trials and wait for our physicians to write the prescriptions. And why not? Virtually every mouse and fruit fly that took these drugs experienced... » FULL ARTICLE

    Posted on December 10, 2015 | Categories : FXS,Keeping You Informed,News Reports and Commentaries | 10 Comments
  • I was honored to have been invited to represent the Fragile X community and the NFXF at the recent meeting sponsored by Neuren Pharmaceuticals, in which they shared some very encouraging news regarding their Phase 2 clinical trial. From my perspective, it’s encouraging to know that there’s a pharmaceutical company still working in FX, the drug is successfully progressing through the typical stages required for FDA approval and we are all hopeful that the news remains positive. For more details, please read the press release issued by Neuren. The announcement is lengthy... » FULL ARTICLE

    Posted on December 7, 2015 | Categories : FXS,In the News,News Reports and Commentaries | 4 Comments
  • Dear Families, You are invited to take part in a fragile X syndrome (FXS) study for racial and ethnic minority children and families by taking an online survey. The researcher, Georgianna Baker-Gay, is a Public Health doctoral student at Capella University. In partial fulfillment of the requirements for the Degree Doctor of Public Health, the researcher has chosen to examine the needs of FXS racial and ethnic minority children and families. The purpose of the study is to create a racial and ethnic minority Fragile X awareness and education program intended to improve identification and management of FXS... » FULL ARTICLE

    Posted on November 13, 2015 | Categories : Opportunities for families | Comments Off on Study: Racial and Ethnic Minority Fragile X Survey
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