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Aphasia is a language-processing disorder that generally is the result of stroke or brain injury. Aphasia usually does not affect intelligence but can leave people unable to communicate effectively they may be unable to read a newspaper, order a cup of coffee, or address an envelope. Forms of aphasia vary depending on the part of the brain affected, and the severity is different from one person to another. However, survivors do tend to share a common experience - the sense of being cut off from their previous life because they can no longer communicate effectively. Social isolation, and the almost inevitable frustration and depression, come quickly because our society tends to ignore, if not shun, people who have difficulty speaking. Aphasia has no medical cure. The mission of the National Aphasia Association (NAA) is to reconnect the more than one million Americans with aphasia with the community by educating the public about aphasia, promoting the development and use of local resources, and advocating on behalf of those who are left, literally, without a voice.
Seeing the destructive impact that aphasia had on her patients and their families led Martha Taylor Sarno, MA, MD (hon), an internationally recognized leader in the rehabilitation of people with aphasia to found the NAA in 1987. Dr. Sarno saw that the needs of people with aphasia were not being met. What she found particularly distressing was that the psychosocial consequences of aphasia were as disabling -- if not more so -- than the physical effects of the stroke. The NAA was established in 1987 to respond to these concernsThrough the NAA, people with aphasia and their families can learn how to live with aphasia, how to obtain needed supports and how others have managed with this disability. The NAA provides these services without regard to race, religion, or nationality. In the 14 years of its existence, the NAA has worked diligently to raise awareness of aphasia throughout the United States, especially by making information available. The heart of its activity is the Response Center, which provides the following services: * The NAA web site (www.aphasia.org) has become one of the organization's most effective means of providing information to the public as well as offering a way to connect people with aphasia and their families with each other. It also updates visitors on NAA activities. The site is intended to be as easy to use as possible by people with aphasia. * Toll-free telephone number - (800) 922-4622. The most frequently asked questions include: Where can I find a stroke support group that will welcome people with speech problems? Are there any clinics in my area that offer speech therapy? Where can I get help now that my insurance has run out? People may also order NAA literature through the toll-free number. * The Center offers publications that are easy to read, including fact sheets, information about national and community resources, and tips for communicating with someone who has aphasia. Other information includes a list of videotapes, a summary of sources of information about the use of computers and adaptive technologies, and information regarding the legal aspects of aphasia. * A national network of health care professionals provides information about local resources including the availability of support groups, rehabilitation services, and social services. * Aphasia Community Support Groups The NAA maintains a state-by-state directory of local aphasia groups that supply support and information for individuals with aphasia and their families. There are currently 265 aphasia community groups in existence, and the Resource Centers refers individuals to these groups whenever possible. To encourage the growth of a network for younger individuals (ages 13-30) years old, the NAA publishes a directory of names of young people who have acquired aphasia and a list of organizational resources for them. For many people, these groups represent their first entr?e back into the larger community. * In addition to items of interest to the aphasia community, and activities at the local, regional, and national levels, the NAA newsletter includes basic information about aphasia and articles on current research. The newsletter is published twice a year; 11,000 copies of the next issue will be distributed to aphasic individuals, families, and professionals. In addition to the Response Center, the most significant accomplishments of the NAA in recent years include: *Establishing Speaking Out, a biennial national conference for people with aphasia and their families as well as professionals who work with them. * The designation each June of National Aphasia Awareness Month. Aphasia materials are distributed throughout the country and publicized through the media and special events by local groups.
- Ellayne Ganzfried
- (212) 267-2814
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