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
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Are You a Parent or Caregiver to a Child with Fragile X Syndrome?
The University of Newcastle, Australia is interested in your experiences regarding the diagnosis of your child. We are also looking at how you told your child/ren about their condition, and how they reacted. If you have not yet told your child, we are interested in what your concerns are around telling them about the syndrome.
. . . Read More: Are You a Parent or Caregiver to a Child with Fragile X Syndrome?
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Exciting Media Attention About Fragile X Clinical Trials
The NFXF is pleased to see the media attention surrounding the latest news resulting from clinical trials for fragile X syndrome treatments. Two members of the NFXF’s Scientific and Clinical Advisory Committee, Dr. Randi Hagerman, the NFXF’s co-founder, and Dr. Elizabeth Berry-Kravis, also a member of the NFXF’s Board of Directors, have been receiving prominent mention. The NFXF has been pleased to be able to assist its corporate partner, Seaside Therapeutics, with recruitment for this
. . . Read More: Exciting Media Attention About Fragile X Clinical Trials
Posted at September 21, 2012 | Categories : Keeping You Informed,News Reports and Commentaries | 4 Comments -
Study on Transition from Adolescence to Adulthood
The University of South Carolina recruiting participants for an online study to help identify policies and services needing to be more responsive to your needs and experiences. They are studying the health and participation in various life activities (school, work, family and community life).
. . . Read More: Study on Transition from Adolescence to Adulthood
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ScienceDaily: Fragile X and Down Syndromes Share Signalling Pathway for Intellectual Disability
NFXF Scientific & Clinical Advisory Committee member Dr. Elizabeth Berry-Kravis had the following to share about the ScienceDaily report recently published. This news article is a little confusing when it implies that treatments for fragile X syndrome (FXS) would also help patients with Down Syndrome (DS). The pathway in the system studied in the EMBO Journal article actually goes in the opposite direction in DS and FXS. This would suggest that reduction of FMRP (like in
. . . Read More: ScienceDaily: Fragile X and Down Syndromes Share Signalling Pathway for Intellectual Disability
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Fragile X Gene’s Prevalence Suggests Broader Health Risk
This report by the highly respected researcher Marsha Mailick Seltzer, director of the University of Wisconsin-Madison Waisman Center, suggests that many premutation carriers, above and beyond those who have FXTAS or FXPOI, may also have medical and/or neurological problems. Combined with recent research suggesting that many of the disrupted genes in studies of autism are associated with FMRP (the protein associated with the Fragile
. . . Read More: Fragile X Gene's Prevalence Suggests Broader Health Risk
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Breaking News – Seaside Therapeutics & Roche Announce Alliance to Advance Treatments
Roche and Seaside Therapeutics announced today that they have entered into a collaboration to develop disease modifying treatments for fragile X syndrome (FXS) and autism spectrum disorders (ASD), both neurodevelopmental disorders
. . . Read More: Breaking News - Seaside Therapeutics & Roche Announce Alliance to Advance Treatments
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Researchers Need Your Help for New Targeted Treatment for Fragile X Syndrome
Seaside Therapeutics is working to deliver drug treatments that address the underlying causes of developmental disorders like fragile X syndrome. Right now, Seaside is testing an investigational medicine for people with fragile X syndrome to improve social function. Social impairment seen in people with fragile X syndrome can appear in many different ways. If your family member
. . . Read More: Researchers Need Your Help for New Targeted Treatment for Fragile X Syndrome
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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
. . . Read More: Online Survey: Usage of Tablet App Technology by Individuals with Fragile X Syndrome
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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
. . . Read More: Study Recruitment: When Do Seizures Occur in People with Epilepsy and Intellectual Disabilities?
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‘Fragile X Syndrome’ Researchers Boost Social Skills in Mice
New treatment method helped brain process chemicals similar to marijuana in animal study TUESDAY, Sept. 25 (HealthDay News) -- Scientists in search of greater understanding of fragile X syndrome, a genetic condition tied to intellectual impairment, or "mental retardation," say they've found a way to boost the ability of mice with a similar condition to become more socially adept. In the new study, the researchers report that they did so by stepping up the brain's
. . . Read More: 'Fragile X Syndrome' Researchers Boost Social Skills in Mice