The Sjögren’s Syndrome Foundation began when Elaine K. Harris was diagnosed with Sjögren’s syndrome in 1982.
Frustrated by the 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. Mrs. Harris took the initiative to launch an organization that could bring about improvement in support, diagnosis, education, and research. With the help of her physicians at Long Island Jewish Medical Center in New Hyde Park, NY, the first meeting of this new group 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 Elaine Harris became the first president of the organization.
The next five years saw the Foundation grow by leaps and bounds – groups and chapters formed across the country, international affiliates were established, symposiums 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 government agencies, such as the National Institutes of Health, National Institute of Dental Research, and National Eye Institute began to recognize the Sjögren’s Syndrome Foundation as the voice of the Sjögren’s syndrome patient.
By the end of 1990, an organizational change was made. The Board of Directors voted to hire an executive director and start to staff the Foundation. This decision was made to help handle the rapidly expanding activities of the Foundation and allow for a more professional day-to-day operation.
Throughout the 1990s, the Foundation continued to expand its outreach by establishing a research fellowship program to support and encourage more effective treatments and an eventual cure for Sjögren’s syndrome. In addition, the Foundation started to develop programs to address the needs of different constituencies, focused on board development, and started to venture into government affairs.
The 2000s brought big change for the Foundation. The SSF first moved its national offices from Long Island, New York to Bethesda, Maryland. This gave the staff and volunteers better access to Capitol Hill as well as the National Institutes of Health. In 2005 the SSF reached a milestone, raising over $1 million for the first time in its history. This growth continued as the SSF’s stature rose in the medical community. In 2006, the Foundation hosted the IXth International Symposium on Sjögren's Syndrome – the premier scientific meeting for Sjögren's syndrome researchers and clinicians. Over 400 attendees representing over 20 countries were at this event in Washington, DC.
Today, the Foundation continues to grow. In June 2008 the Foundation raised over $2 million in one fiscal year. (See our annual report to learn more about programs and projects in 2008). The organization currently supports over $400,000 in research initiatives, 80+ support groups, and numerous awareness initiatives for the general public and healthcare professionals.
Our Board of Directors is well-rounded with representation from patients, healthcare professionals and the lay public. We have a world-renowned Medical & Scientific Advisory Board and we recruit thousands of volunteers annually for our programs, projects and events.
Since 2005, the Foundation has been recognized annually by the National Health Council (NHC) for meeting their Standards of Excellence. These standards were developed by the NHC to ensure that voluntary health agencies were maintaining the highest standards of organizational effectiveness and public stewardship.