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Practical Handbook for Educating Children with Velo-Cardio-Facial Syndrome and Other Developmental Disabilities
by Donna Landsman,
the person who has lectured more about education and VCFS than any other person in the world. Available on advance order from Amazon.com for $55.00.
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Velo-cardio-facial Syndrome: A Model for Understanding Microdeletion Disorders
Edited by Kieran C. Murphy Education and Research Centre, Royal College of Surgeons of Ireland, Peter J. Scambler Institute of Child Health, University College London.
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Velo-Cardio-Facial Syndrome, volume 1
by Robert J. Shprintzen and Karen J. Golding-Kushner
is a comprehensive text describing the full range of clinical findings associated with VCFS. The text is accompanied by a DVD that contains 19 videos that compliment the text and more than 110 figures, many in color, including growth charts specific to VCFS. Chapter 1 details the history of VCFS, its delineation, and the current interest in this important syndrome. Chapter 2 details the phenotypic spectrum of VCFS, detailing 190 clinical features of the syndrome with 72 figures associated with the written descriptions. Chapter 3 discusses the genetics of VCFS in straightforward and simple language that is suitable for all readers. Included in Chapter 3 is a description of how the deletion occurs and why it can account for the expansive clinical spectrum. Chapter 4 is a guide for the clinical management of VCFS including triage systems that are specific to the natural history of the syndrome. Chapter 5 provides an important discussion of growth, weight gain, and feeding in VCFS and includes the first growth chart specific to the syndrome. Feeding techniques are discussed, as are the reasons for feeding difficulties in VCFS. The aim of this chapter is to avoid stress and medical dependency that can be better understood based on the growth curves provided.
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Therapy Techniques for Cleft Palate Speech and Related Disorders
Authored by Karen J. Golding-Kushner, PH.D
A book focusing on the treatment of speech disorders associated with VCFS is available from Amazon and other sources. The volume book is the outcome of a meeting by a consensus panel of the leading experts in treating these disorders. That meeting was supported in part by a grant from the Educational Foundation in response to the recognized need for a book that detailed speech therapy approaches in children with VCFS. There is one entire chapter devoted specifically to VCFS and similar genetic disorders. Available from Amazon for approximately $65.00.
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"MISSING GENETIC PIECES: Strategies for Living with VCFS,
The Chromosome 22q11 Deletion", written by Ms. Sherry Gomez of Arizona:
A comprehensive HANDBOOK for Parents, Professionals and Anyone wanting to know about Chromosome 22 Deletion (22q11) and its dynamics. Note: A portion of the proceeds from this book is being donated to the VCFS Educational Foundation, Inc.
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A Different Life: Growing Up Learning Disabled and Other Adventures
by Quinn Bradlee and Jeff Himmelman
Review
Kate and Jim Lehrer
""A Different Life" is a marvel--a stunning rocket of honesty about growing up learning disabled. As Quinn explains his frustrations, dreams, set-back and triumphs, he also explores with humor and sensitivity the difficulties in even a loving family's dynamic of dealing with their son. The portrait that unfolds is not so unlike that of many a family -- his father loving but firm and wanting to fit him for the world and a mother who does everything in her power to protect him from the emotional and physical suffering he often endures. Yet through the heartbreak shines Quinn's hopefulness and kindness and spills onto us all. This book is for everyone."
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Mathematical disabilities in children with velo-cardio-facial syndrome [An article from: Neuropsychologia] by B. De Smedt, A. Swillen, K. Devriendt, and J.P. Fryns (Digital - Jan 2007) - HTML |
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Growth Velocity, Weight Gain & Growth Charts for Velo-cardio-facial Syndrome: Management of Feeding & Swallowing Problems by Robert J. Shprintzen (Paperback - Sep 30, 2009)
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