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Recommended Books on Fragile X Syndrome
The Official Parent's Sourcebook on Fragile X Syndrome: A Directory for the Internet Age This book has been created for parents who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells parents where and how to look for information covering virtually all topics related to fragile x syndrome (also FRAXA; Marker X Syndrome; Martin-Bell Syndrome; X-linked mental retardation; X-linked Mental Retardation and Macroorchidism), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on fragile x syndrome. Given parents' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms.
Do women with fragile X syndrome have problems in switching attention: Preliminary findings from ERP and fMRI [An article from: Brain and Cognition] This digital document is a journal article from Brain and Cognition, published by Elsevier in 2004. The article is delivered in HTML format and is available in your Amazon.com Media Library immediately after purchase. You can view it with any web browser.
Description: Fragile X syndrome (FXS) is a neurodevelopmental disorder that represents the most common known cause of developmental delay. Recent neuropsychological findings indicate that females with FXS present with a specific pattern of cognitive deficits and that these difficulties primarily involve skills requiring executive control. The present study is the first to examine the extent to which neural activity of females with FXS can be observed on a task that specifically taps two core deficits, namely switching and response inhibition. Brain activity was measured using both event-related electrical potentials (ERPs) and event-related functional MRI (fMRI) neuroimaging in separate studies using the same cognitive paradigm. Compared to controls, females with FXS were significantly slower and made more errors on trials that required an immediate response (Go) to stimulus onset but were comparable on trials that required a delayed response (Wait) to stimulus onset. At the brain level, several areas showed significantly greater activation for females with FXS compared with controls, including the cingulate cortex and left and right ventral prefrontal areas. In contrast, no areas were found to show significantly greater activation for controls compared with females with FXS.
21st Century Complete Medical Guide to Fragile X Syndrome, FRAXA, Authoritative Government Documents, Clinical References, and Practical Information for Patients and Physicians (CD-ROM) This up-to-date electronic book on CD-ROM provides the best collection available anywhere of official Federal government information and documents on the subject of fragile X syndrome (FRAXA). This CD-ROM uses next-generation search technology that allows complete indexing and makes all files on the disc fully searchable. For patients, practical information is provided in clearly written patient education documents. For medical professionals, doctor reference tools and texts have detailed technical information and clinical background material.
Fragile X syndrome is the most common inherited form of mental retardation. It results from a change, or mutation, in a single gene, which can be passed from one generation to the next. The most noticeable and consistent effect of Fragile X is on intelligence. This thoroughly researched collection presents vital information from many authoritative sources: National Institutes of Health (NIH), Centers for Disease Control (CDC), Food and Drug Administration, and the National Institute of Child Health and Human Development (NICHD). Contents include clinical and medical information, with information on signs, symptoms, testing, diagnosis, treatment, and more. In addition, as a bonus we have included an encyclopedic collection of general medical and health documents - thousands of pages with extensive material from the CDC and NIH on hundreds of diseases and health topics from A to Z, along with FDA drug and medical publications, government consumer healthcare tips, disease prevention programs, dietary guidelines, and travelers' health information. Since navigating the Internet to find additional non-governmental medical information can be confusing, we've also provided our exclusive "Guide to Leading Medical Websites" with updated links to 73 of the best sites for medical information! By using weblinks on the CD-ROM, you can quickly check for the latest clinical updates directly from the government. This CD-ROM has over 36,000 pages reproduced using Adobe Acrobat PDF software and Reader software is included. Advanced search and indexing features are built into our reproduction, providing a complete full-text index. This enables the user to search all the files on the disk at one time for words or phrases using just one search command! The Acrobat cataloging technology adds enormous value and uncommon functionality to this impressive collection of government documents and material. There is no other reference that is as fast, convenient, comprehensive, and portable! Our CD-ROMs are privately-compiled collections of official public domain U.S. government files and documents - they are not produced by the federal government. They are designed to provide a convenient user-friendly reference work, utilizing the benefits of the Acrobat format to uniformly present thousands of pages that can be rapidly reviewed or printed without untold hours of tedious searching and downloading. This book-on-a-disc makes a superb reference work and educational tool for patients and their families, physicians, and other medical professionals. (Information on this CD-ROM is NOT a substitute for professional medical advice; of course, readers are urged to consult with a professional health care provider for any suspected illness.)
Fragile X Syndrome: A Guide for Teachers Fragile X Syndrome is thought to be the most common inherited cause of learning difficulties. However many people have never heard of it and those who have, including many of the professionals who work with those affected by it, have little knowledge or understanding of the condition. This book brings up to date research with information and advice from teachers who are discovering, first hand, the best ways of educating children with Fragile X. It is much needed support and advice that will help teachers to understand the child with Fragile X and encourage maximum educational progress. / While the book is aimed at teachers, it is also an excellent resource for parents, therapists and any professional working with a child who has Fragile X.
Supporting Children with Fragile X Syndrome (Supporting Children) Off-the-shelf support containing all the vital information practitioners need to know about Fragile X Syndrome, this book includes: · Definition of Fragile X Syndrome and its educational implications · Ideas on how to improve access to the curriculum · Advice on how to manage support staff · Guidance on coordinating home and school liaison
Educating Children with Fragile X Syndrome: A Multi-Professional View Pupils with Fragile X syndrome are currently being educated in many different types of mainstream and special school settings. This definitive book, published in association with the Fragile X society, provides invaluable information, support, and guidance on educating a child with Fragile X, background on the origins of this syndrome, and what the implications are for such a child's teaching and learning. Featuring contributions from professionals working and researching in a wide variety of fields, the book accurately reflects the multi-agency approach taken today's inclusive schools. A list of relevant further reading is also provided, along with details of support groups.
Fragile X Fragile Hope: Finding Joy In Parenting A Child with Special Needs Elizabeth Griffin's son Zack has fragile X syndrome-the most common known cause of inherited mental impairment-and is among the 20 percent of people with fragile X who have autism. Whether you are a parent of a child with special needs or you struggle with unresolved grief, chronic stress, or depression, "Fragile X, Fragile Hope" shows without a doubt that you can survive, and more than survive, you can find your way back to a joy-filled life.
Mathematics learning disability in girls with Turner syndrome or fragile X syndrome [An article from: Brain and Cognition] This digital document is a journal article from Brain and Cognition, published by Elsevier in 2006. The article is delivered in HTML format and is available in your Amazon.com Media Library immediately after purchase. You can view it with any web browser.
Description: Two studies were carried out to examine the persistence (Study 1) and characteristics (Study 2) of mathematics learning disability (MLD) in girls with Turner syndrome or fragile X during the primary school years (ages 5-9 years). In Study 1, the rate of MLD for each syndrome group exceeded the rate observed in a grade-matched comparison group, although the likelihood of MLD persisting through the primary school years was comparable for all three groups. In Study 2, formal and informal math skills were compared across the syndrome groups, a normative group, and children from the normative group who had MLD. Few differences were observed between the Turner syndrome and normative groups. Despite having rote counting and number representation skills comparable to those in the normative group, girls with fragile X had difficulty with counting rules (e.g., cardinality, number constancy). However, this difficulty did not distingush them from the MLD group. Overall, counting skills appear to distinguish the Turner syndrome and fragile X groups, suggesting that the specificity of math deficits emerges earlier for fragile X than Turner syndrome.
Dear Megan: Letters on Life, Love and Fragile X (Capital Cares) (Capital Cares) Mary Beth Busby and Megan Massey have something in common--they are both mothers of two sons with Fragile X syndrome (the most common form of inherited mental retardation and the most common cause of autism). When Mary Beth Busby's sons, Robert and Jack, were born in 1964 and 1965, Fragile X had not even been identified as a genetic abnormality. By the time Megan Massey's sons Jack and Jacob were born in 1989 and 1991, a few researchers had identified it, but few pediatricians knew it existed. Today it is known that Fragile X affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups. Mary Beth and Megan met when they both became active in the Fragile X Research Foundation (FRAXA). They wrote "Dear Megan" to offer hope and support to the millions of parents who care for and love their disabled children. Written in the form of intimate letters between the two authors--who are separated in age by a generation--the book reveals the personal side of parents struggling with the challenges of school systems and health systems, marriage, and life to care for their disabled sons. It also shows the joy and love they find through these special children and adults.
Fragile X Syndrome: Diagnosis, Treatment, and Research (Johns Hopkins Series in Contemporary Medicine and Public Health)
Fragile X syndrome is the most common inherited form of mental retardation. Now substantially revised and updated, this acclaimed book discusses the clinical approach to diagnosing the disorder, supported by the latest research in epidemiology, molecular biology and genetics, and neuropsychology. It also presents information on treatment: genetic counseling, pharmacotherapy, intervention, and gene therapy.
© 2005-2008 Fragile X Syndrome Research Today. All Rights Reserved.
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