Socio-Cultural Dimensions of Neurofibromatosis
{'Code': '04040400', 'Directorate': {'LongName': 'Direct For Social, Behav & Economic Scie'}, 'Division': {'LongName': 'Division Of Behavioral and Cognitive Sci'}}
{'SignBlockName': 'name not available'}
This project will study the life experiences, coping patterns and               social supports of individuals with neurofibromatosis (NF), a                   common chronic and progressive neurological disorder.  The                      individual with NF faces a lifetime of dealing with a disfiguring               and disabling chronic disease whose prognosis is unpredictable.                 The project will study the local and national NF support groups,                and will document the ways in which the media-created image of                  "the elephant man" as the personification of the dread and                      stigmatized disease has affected the adaptation of individuals                  and their families to their condition.                                                                                                                          The research will use indepth interviews and observation of                     individuals and families and NF support groups.                                                                                                                 This research is significant because it will show how individuals               and families adapt to (organize, amd cope with) the complexities                of genetic and chronic illness, stigma and disability.  This                    research will be shed light on stigma as a social condition, and                on the role of support groups in dealing with dramatic,                         stigmatized and often unpredictable health conditions.
{'FirstName': 'Joan', 'LastName': 'Ablon', 'EmailAddress': 'ablonj@aol.com', 'StartDate': '01/01/1989', 'EndDate': None, 'RoleCode': 'Principal Investigator'}
{'Name': 'University of California-San Francisco', 'CityName': 'San Francisco', 'ZipCode': '941034249', 'PhoneNumber': '4154762977', 'StreetAddress': '1855 Folsom St Ste 425', 'CountryName': 'United States', 'StateName': 'California', 'StateCode': 'CA'}
{'Code': '1390', 'Text': 'CULTURAL ANTHROPOLOGY'}
{'url': 'https://www.nsf.gov/awardsearch/download?DownloadFileName=1988&All=true', 'xml': '8819633.xml'}