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Boston Children’s Hospital recently became a site for a Novartis drug trial testing an mGluR5 antagonist in adults. Additionally, a Novartis trial of the same drug in adolescents is actively recruiting at BCH. The adult study is for individuals with fragile X ages 18-45, while the adolescent study is for 12-18 year olds. The . . . » Continue reading The Neurodevelopmental Disorders Lab at the University of South Carolina has a newly-funded research study examining how language abilities impact the success of adolescents with fragile X syndrome after graduating high school and entering into adulthood. They are currently recruiting adolescent males who are 14-22 years of age with the full mutation of fragile . . . » Continue reading Sorry for the short notice but we just learned that Dr. Len Abbedutto, PhD, Director of the MIND Institute, UC Davis, will be presenting at UMass Department of Psychiatry Grand Rounds from 12 PM to 1 PM. Dr. Abbedutto’s topic will be “Fragile X Syndrome and Language Development: Phenotype, Variation, Mechanisms and Treatment.” Grand . . . » Continue reading Please consider taking this RTI survey, it will take approximately 20 minutes and RTI will donate $15 to the NFXF for each survey completed! It’s an easy way to help the Foundation with its mission! Treatment Preferences for Fragile X Syndrome. Phase III Trials for Seaside Therapeutics’ STX209 are now ongoing. There is a trial site in Massachusetts this time. We had a chance to speak with Michael Hill, the Research Coordinator, at the UMASS Worcester location to discuss the trial process and decided to share it with you in case you are considering taking . . . » Continue reading The Individuals with Disabilities Education Act (IDEA) will be reauthorized within the next year or two. To prepare for the reauthorization of IDEA, several disability organizations are sponsoring a survey that seeks to answer this question: “Are parents treated as equal partners in planning their children’s education?” If you are the parent of a . . . » Continue reading For anyone who is interested, two Phase 3 Studies of STX209 for Social Withdrawal in Fragile X Syndrome will be starting soon. The initial study will cover ages 12 – 25 with a study covering ages 5-11 following. There will be 20 study sites, including one in Worcester, MA. The studies are not yet recruiting but we will . . . » Continue reading We received an e-mail from Elizabeth M. Struve, MSW, who is the grandmother of two young boys with Fragile X, regarding her goal of opening a day program to serve the needs of adults with Fragile X Syndrome. She is interested in gathering data from families to identify what services are most needed. If . . . » Continue reading Another great story on the fantastic research being done on Autism and Fragile X by Seaside Therapeutics, this time in Time Magazine. One night in 2006, Kathy Roberts rushed her autistic daughter, Jenny, to the hospital. Nothing had been able to stop the young woman, then in her mid-20s, from vomiting. Jenny had recently . . . » Continue reading This is big time, my friends! FORBES! Decoding Autism By: Robert Langreth Mark Bear, 53, has been fixated on understanding the brain since he was 6–when he saw news commentators speculating about John F. Kennedy’s brain functioning after the shooting. He later became a neuroscientist, now at the Massachusetts Institute of Technology, spending most . . . » Continue reading |
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