In early 1990, our founder, Ed Harris, was diagnosed with systemic scleroderma, a rare, major autoimmune disease that mostly affects women between 35 and 60. The best prediction at the time was that he would never live to see the millennium. At the time of his diagnosis, Ed was running one of the larger software companies in the US, a company he co-founded in 1982. In addition to having advanced degrees in mathematics and computer science, Ed also had graduate training as a research clinical psychologist, a key component of his remarkable story.
With his symptoms progressing rapidly by late 1992, Ed began to search for new research-based treatment approaches that his team of physicians might not be aware of. Even though his wife was on the clinical faculty of the University of Wisconsin School of Medicine, giving him access to the medical school library there, doing research before the Internet was very challenging; it required going through bound copies of research journals one at a time. However, thanks to a chance meeting on an airplane and a generous “pay it forward” gift, he was able to complete his research in early 1993 and formulate a novel disease pathogenesis model and a proposed experimental treatment based on this new disease model. He obtained insurance approval and began these experimental treatments in late 1993. Over the next two years of continued regular treatments, almost all of his symptoms went into full remission. He remains in excellent health with no return of clinical symptoms as long as his treatments are continued on a regular basis. His case report (Ed was the lead author) was recently published in the research journal Clinical Hemorheology and Microcirculation.
Ed returned to normal health in 1995 and he wanted to try to help others deal with this terrible disease. With his computer background and the recent growth of the Internet, he created a website designed to educate scleroderma patients so they could work more effectively with their team of physicians to make the best possible individual care decisions. This website, initially just called the Scleroderma FAQ™ was launched in 1996 and for many years was one of the main sources of online information available to patients around the world. Now part of the Scleroderma Education Project website, the Scleroderma FAQ is a comprehensive, up-to-date, unbiased, research-based document that incorporates the latest in medical research but is written in a manner that can be understood by scleroderma patients with no medical training.
In July 2014, Ed launched a completely redesigned Scleroderma Education Project™ website, located at SclerodermaInfo.org. The Scleroderma Education Project website includes an updated version of the Scleroderma FAQ, a Guide for New and Future Patients (also available in Spanish), and a series of technical articles on advanced topics like ANA and antibody testing. New articles and blog posts are constantly being added to the website, including some articles that are focused on educating physicians as well as patients. In early 2016, the Scleroderma Education Project was recognized as a 501(c)(3) tax-exempt non-profit organization by the United States Internal Revenue Service (EIN: 81-1450999). The Scleroderma Education Project is entirely staffed by volunteers so all contributions are used to advance scleroderma education and research.
In 2015, as it became increasingly clear that current research is doing little to improve the lives and sufferings of patients dealing with this terrible disease, we made the decision to expand the mission of the Scleroderma Education Project to include fostering new research based on the novel disease pathogenesis model that Ed originally proposed in 1993. Our expanded Research Advisory Board (RAB) now includes researchers with expertise in blood rheology (biophysical properties of blood), antibodies, therapeutic aphaeresis, and immunology – the skills we feel are needed to advance this new research effort. Our group has written and presented research posters at three medical conferences over the past 18 months, including the American Association of Blood Banking annual meeting in October 2015, the American Society for Apheresis annual meeting in May 2016, and the American College of Rheumatology annual meeting in November 2016. An expanded version of the first research poster was recently published in Clinical Hemorheology and Microcirculation and we are currently preparing manuscripts based on the other two research posters for journal submission in 2017.
Other research activities that are currently underway include: 1) submission of a NIH grant proposal to study blood rheology in patients with systemic scleroderma, and 2) a pilot study of blood type distributions in patients with systemic scleroderma.