The Churg Strauss Syndrome Association was founded in June, 2004 by two patients, Jane Dion (right) and Dr. Carol Kavanaugh (left). Its original purpose was to gain representation on the Vasculitis Clinical Research Consortium which had recently received more than six million dollars in funding for vasculitis research. Carol and I were invited to attend a meeting of the Rare Disease Clinical Research Network in Rockville, Md. where we were encouraged and supported in our efforts to set up this resource to maintain a presence within the rare disease patient advocacy community.
Because Churg Strauss Syndrome is so rare and because it manifests itself in many ways, diagnosis and treatment can be problematic and confusing. Many of us search the web for pertinent information on the disease and its treatment. This task can feel overwhelming to the newly diagnosed. In addition, there has not been much research on CSS and therefore it remains somewhat of a mystery. Because it affects everyone differently, treatment is not standard. The treatments themselves need to be understood as they can have adverse effects. Some of the articles are written in “ doctor speak” which is hard for the lay person to interpret. We intend for this web site to be a place where patients and their families can easily find the information and support they need to better understand CSS. We also hope that by banding together and establishing a strong presence we might stimulate and support research into our disease.