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4. Support groups for persons with AS

Angelman Syndrome is receiving increased attention due to the existence of local and national AS groups, supported at least in part, by government funds.^{5, 11,21}

According to Frank McCullough, newly elected President of the Angelman Syndrome Foundation, Inc. (ASF) in the United States, the first AS group was founded by families in England where Dr. Angelman carried out his initial work.²¹ In North America, cases of AS were not diagnosed until the 1980s, when Dr. Charles Williams of the University of Florida—Gainesville began to recognize and diagnose individuals with AS. Today AS has "emerged as one of the more common identifiable syndromes of ataxia, mental retardation and severely diminished or absent speech."⁸ AS foundations and support groups educate and support parents and professionals in many countries throughout the world.

Currently, a major focus of AS support groups is communication. A videotape about communication issues in AS, Promoting functional communication in children with Angelman Syndrome, featuring AAC's own Dr. Stephen Calculator, is available from the AS Foundation for $25 US. Two excellent publications listed below also are available from this group (free to members):

• Angelman Syndrome. A 25 page comprehensive, state-of-the-art report on all aspects of AS. Currently in press for Current Problems in Pediatrics.

• Angelman Syndrome: A Parent's Guide. This practical, informative guide is based on a survey of 179 families and written by the parent of a child with AS. The survey covers classroom settings, medications, communication strategies, respite care, vacation ideas, meal choices, toys and entertainment preferences for children with AS.

This article appears in ACN Volume 8, # 3.

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