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

• Online Survey: Usage of Tablet App Technology by Individuals with Fragile X Syndrome

  Has app technology made a qualitative difference for your affected family member? Please help us share valuable information about use of app technology by individuals with fragile X syndrome by completing the following survey developed by Laurie Yankowitz, EdD, and Vicki Sudhalter, PhD. Results will be presented at the upcoming International Fragile X Conference in July.   Usage of Tablet

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  Posted at May 24, 2012 | Categories : Opportunities for families | 5 Comments
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  Study Recruitment: When Do Seizures Occur in People with Epilepsy and Intellectual Disabilities?

  Researchers from the University of Cambridge (UK) are carrying out an online survey about situations that might increase or decrease the chances of children/adults with epilepsy and intellectual disability having a seizure. We hope that learning more about this will lead to improved seizure management for people with Fragile X and other syndromes with high rates of epilepsy and

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  Posted at May 23, 2012 | Categories : Opportunities for families | 4 Comments

• Questions & Answers About Clinical Trials

  Our latest podcast features Robert Miller of the National Fragile X Foundation and representatives of the the major pharmaceutical companies involved in ongoing Fragile X Clinical Trials. We have Dr. Paul Wang, Vice President, Clinical Development of Seaside Therapeutics; Dr. Eriene Wasef, Associate Clinical Director of Hoffman-La Roche; and Dr. Marla Hochfeld, Executive Medical Director of Novartis. Listeners will hear insightful answers to the following questions: What is a clinical trial? Why are clinical trials important? How do clinical trials contribute to

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  Posted at May 14, 2012 | Categories : News Reports and Commentaries,Podcast,Podcast,Website Update | 13 Comments
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  You Can Help Our Fragile X World

  Your answers will help give a better understanding of how fragile X syndrome affects families and children What job opportunities are available to young adults with fragile X syndrome? When do parents tell a daughter that she is a carrier of fragile X syndrome? How knowledgeable is your child’s doctor about fragile X syndrome? How do you plan for the long term care of adult children with fragile X

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  Posted at April 30, 2012 | Categories : Fragile Xtras,Opportunities for families | 2 Comments
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  JS Genetics Announce Launch of its Bloodless, Cheek Swab Test for Fragile X Syndrome

  New Haven Conn., April 18, 2012 /PRNewswire/ -- JS Genetics announces the launch of XCAT-FX, its propitiatory buccal swab test for the detection of fragile X syndrome. Fragile X syndrome is the most common cause of inherited intellectual disability (mental retardation) in males and a leading cause of infertility and fragile X-associated primary ovarian insufficiency in females. Fragile X is

  . . . Read More: JS Genetics Announce Launch of its Bloodless, Cheek Swab Test for Fragile X Syndrome

  Posted at April 17, 2012 | Categories : News Reports and Commentaries | 0 Comment

• Fragile X Syndrome Can Be Reversed in Adult Mouse Brain

  Robert Miller Executive Director National Fragile X Foundation Readers should know that the researchers involved with this study, and their affiliated institutions and companies, are highly regarded and well-known in the Fragile X community of professionals. (Apr. 11, 2012) — A recent study finds that a new compound reverses many of the major symptoms associated with Fragile X syndrome (FXS), the most common form of inherited intellectual disability and a leading cause of

  . . . Read More: Fragile X Syndrome Can Be Reversed in Adult Mouse Brain

  Posted at April 13, 2012 | Categories : Keeping You Informed,News Reports and Commentaries | 19 Comments

• Seaside Therapeutics Announces Issuance of Key Patent for Lead Autism/FXS Candidate STX209

  New Patent Complements STX209 Orphan Drug Designation for Fragile X Syndrome CAMBRIDGE, Mass., Mar 27, 2012 (BUSINESS WIRE) -- Seaside Therapeutics, Inc. announced today that the United States Patent and Trademark Office (USPTO) has granted US patent No: 8,143,311, titled “Methods of Treating Fragile X Syndrome and Autism,” which covers the use of the Company’s lead product, STX209, for the improvement of social and communication functions in autism.

  . . . Read More: Seaside Therapeutics Announces Issuance of Key Patent for Lead Autism/FXS Candidate STX209

  Posted at March 27, 2012 | Categories : News Reports and Commentaries | 5 Comments
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  Investigational Drug Study for Children with Fragile X Syndrome – Baltimore

  Kennedy Krieger Institute is looking for children, ages 5 through 11 years, with fragile X syndrome to participate in a research study. The purpose of this study is to determine if an investigational drug, arbaclofen, is an effective treatment for social withdrawal symptoms associated with fragile X syndrome. This study will also assess whether arbaclofen is safe and tolerated by individuals with fragile X syndrome. Social

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  Posted at March 4, 2012 | Categories : Opportunities for families | 0 Comment
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  Does Your Adolescent or Young Adult Have Fragile X Syndrome?

  New Stanford Treatment Study Focused on Fragile X Syndrome Adolescents and Young Adults with Fragile X Syndrome Age 12-29 Years Needed We are recruiting females and males between the ages of 12 and 29 years to participate in a newly funded medication study in fragile X syndrome. Participants will have the opportunity to receive the medication, donepezil, which may improve cognition and behavior in individuals with this important condition.

  . . . Read More: Does Your Adolescent or Young Adult Have Fragile X Syndrome?

  Posted at March 1, 2012 | Categories : Opportunities for families | 1 Comment

• Does Your Child Need Help to Improve His/Her Math Skills?

  Standford University Research Individuals with Fragile X Syndrome Age 9-23 Years Needed We are conducting a behavioral treatment study utilizing a fun, reward-based learning paradigm to maximize your child’s learning potential. Participation involves: Coming to Stanford for 3 days Cognitive testing MRI scan Intensive behavioral intervention Inclusion criteria for participation – child must be: Between 9-23 years of age Diagnosed with fragile X syndrome Does not experience seizures Right handed (or favor his/her right hand) Able to lie still for up to 10 min with instruction Benefits of

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  Posted at February 14, 2012 | Categories : Opportunities for families | 1 Comment