Elaine K. Harris was diagnosed with Sjögren’s in 1983. She quickly became frustrated by how long it took to identify the symptoms that she was experiencing and discouraged by the lack of information that existed about the disease. Without an existing Foundation or the internet, Elaine was able to find only two patient fact sheets that even mentioned the disease. Determined to take control of her health and learn more about her symptoms, Elaine used her past community involvement to start a local support group with the only other Sjögren’s patient that she met, the secretary of her doctor. Initially determined to simply meet other patients and start a support group, she ended up achieving so much more, growing that support group into what today is the Sjögren’s Foundation.
Elaine took the initiative to launch an organization that could bring about improvement in support, diagnosis, education, and research for Sjögren’s. 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 that has now evolved into Conquering Sjögren’s was published and, in the summer of 1985, the Foundation was incorporated. A board of directors was then established with Elaine Harris becoming the first president of the Sjögren’s Foundation. Today, the Foundation has grown into a powerhouse organization, breaking down barriers worldwide in the field of Sjögren’s.
When Elaine Harris Founded the organization, she had a mantra — “founded by a patient, for patients.” This mantra remains the center of what we do today as the Foundation continues to ensure that the patient voice is never lost in our efforts.
“As a Sjögren’s patient myself, I am deeply grateful that Elaine created this organization because it was the single most important source of information and support for me when I was diagnosed. Elaine's clear vision will forever live on in the Foundation as we continue to carry the torch and advocate in honor of all patients."
-Janet E. Church, Sjögren’s Foundation President & CEO
“Faced with Sjögren’s, Elaine Harris singlehandedly mustered the determination to combat the disease by planting the seeds for the foundation. An example of one bettering the lives of many.”
-Steve E. Carsons, MD, Sjögren’s Foundation Medical and Scientific Advisors Founding Member
“I will forever be indebted to her, for her drive, her energy, and her vision. She was so proud of what the Foundation has become today, and I am honored to have worked side-by-side with her as she first led the way and give us our wings."
- Katherine Morland Hammitt, Sjögren’s Foundation Vice President of Medical & Scientific Affairs
"Elaine truly demonstrated the ability of a single determined individual to make a big difference in the lives of many and leave a permanent legacy behind."
-Arthur I. Grayzel, MD, Sjögren’s Foundation Medical & Scientific Advisory Council Founding Member
“Elaine was one of that rare breed of people who have the inspiration and drive to create something significant. After determining nothing existed to support Sjogrens patients, she forcefully enlisted all the relevant LIJ doctors and motivated us to help her realize her dream of The Moisture Seekers support group. Elaine was one of a kind and will be sorely missed!"
-Ira Udell, MD, Sjögren’s Foundation Medical & Scientific Advisory Council Founding Member