The Sjögren’s Foundation turns 40 and we are celebrating! The first support group was held in September 1983 and that is the date that we mark as our first day of operation! So, from September 2023 through next September, you will see this new 40th logo for the Foundation as well as ways we incorporate the 40th links into many of our programs. Marking important milestones, such as this, is part of bringing more awareness to this disease so people understand that Sjögren’s is serious, systemic, and deserves attention.
Elaine K. Harris was diagnosed with Sjögren’s in early 1983, and that sparked the beginning of what grew to become today’s Sjögren’s Foundation with national and international reach and accomplishments. She was frustrated by how long it took to identify that the symptoms she was experiencing was a disease called Sjögren’s Syndrome. After diagnosis, she attempted to learn more about her disease and how to manage it. However, she became discouraged by the lack of information that existed about Sjögren’s. There was no Foundation and no internet to search, and after a lengthy process trying to find information, Elaine was able to find only two documents 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 by growing that support group into what today is the Sjögren’s Foundation.
"Faced with Sjögren’s, Elaine Harris single-handedly 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
That first support group meeting was held in September 1983 at Long Island Jewish Medical Center with the help of her physician. Six months later, the first issue of The Moisture Seekers newsletter, which has now evolved into Conquering Sjögren’s, was published. In the summer of 1985, the Foundation was incorporated. The first board of directors was then established with Elaine Harris becoming the first president of the Sjögren’s Syndrome Foundation. There were many wonderful volunteers and leaders who guided the Foundations growth and in 2003, the leadership torch was passed to Steven Taylor, who grew the organization in the Washington D.C. area and clarified its mission to:
- Support and Educate patients and their loved ones;
- Educate and provide credible resources for healthcare providers;
- Be the voice of all patients through advocacy efforts;
- Encourage and Fund innovative research to learn more about Sjögren’s and how to better diagnose, manage, treat, and ultimately cure this disease.
In 2020, the Foundation changed its name to the Sjögren’s Foundation and launched the global nomenclature initiative to drop the term “syndrome” and change the name of the disease to Sjögren’s disease worldwide to better reflect the true impact of this disease. In 2021, the torch was passed to Janet Church to lead the organization into the next chapter, where we will see more research being funded, an expansion of provider education across specialties to support multi-disciplinary care, and new systemic therapies preparing to come to market.
Today, the Foundation has grown into a powerhouse organization with passionate staff and dedicated volunteers, breaking down barriers worldwide in the field of Sjögren’s. All of this has been possible because one determined woman, who knew that more had to be done for patients, launched a national support effort that became the Foundation and envisioned the future.
On June 7, 2022, at the age of 98, we lost Elaine, but her legacy will live on in the people that she helped and all the patients whose lives are impacted by the work of the Foundation that she established.
At the Foundation, supporting our patients is a critical part of our mission. If you or your loved ones would like to find a Sjögren’s support group in your area, please visit our Support Groups & Networks.
"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.