1982-1991: The Beginning Decade
The Foundation had its beginnings when Elaine K. Harris was diagnosed with Sjögren's syndrome in 1982. Frustrated by the year long process to put a name to the physical symptoms she was experiencing and discouraged by a lack of information about Sjögren's syndrome, Elaine Harris was determined to meet other patients and start a mutual-aid group. With the help of her physicians at Long Island Jewish Medical Center in New Hyde Park, NY and the Arthritis Foundation, the first meeting was held in 1983. Six months later, the first issue of The Moisture Seekers newsletter was published. By the summer of 1985, the group was incorporated, a board of directors was established, and the Sjögren's Syndrome Foundation was born.

Local groups and chapters formed across the country, international affiliates were established, symposia were held to educate the lay public and medical community, and the Sjögren's Syndrome Handbook was published. The Foundation was invited to participate at prestigious professional conferences, such as the American College of Rheumatology, American Academy of Ophthalmology, and American Dental Association. The medical community and governmental agencies, such as the National Institute of Dental Research and National Eye Institute (of the National Institutes of Health) began to recognize the Sjögren's Syndrome Foundation as the voice of the Sjögren's syndrome patient.

1992-2001:
In its second decade, the Foundation established a research fellowship program to support and encourage more effective treatments and an eventual cure for Sjögren's syndrome. Programs were developed to address the needs of young patients (people under the age of 39), and a registry for men with Sjögren's was established. The research program expanded to include student summer fellowships.

In 1998, the Foundation succeeded in having April declared "Sjögren's Syndrome Awareness Month." Each year the Foundation launches a media campaign to increase awareness of Sjögren's syndrome. Chapter, groups, and individual members are asked to distribute media packages to their local newspapers, radio and television stations. The contents of the packages change with the latest information on Sjögren's syndrome.

By the mid 1990s, the Foundation had established an effective committee structure, including an active Government Affairs. Increasingly, the Foundation became active in encouraging the federal government to increase funding for basic biomedical research and for research into autoimmune diseases in general and Sjögren's syndrome in particular. In April 2001 the Foundation's Board voted to move the Foundation's headquarters to the Washington, DC, area to become more effective in government relations, liaison with other voluntary health agencies, patient and professional education, and membership services.

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