In Appreciation:

The creation of this website was made possible by the encouragement and support of many people. I would like to express my appreciation to the many people who helped in the creation of this resource.

First of all, I have to thank Dr. Peter Merkel who encouraged the formation of a CSS patient advocacy group to ensure representation in the research world. With the funding of the Vasculitis Clinical Research Consortium, it became even more important to form a group to partner with researchers as well as other vasculitis groups in order to advance the goals of the VCRC as well as to help educate and empower patients with CSS. Dr. Merkel has guided and supported this mission from the start.

Thanks also to Giovanna Spinella and Stephen Groft from the Office of Rare Diseases and Elaine Collier from the National Center for Research Resources, NIH for recognizing our group in its earliest form and including us in a meeting of all the patient advocacy groups associated with the RDCRN in June 2004. It was inspiring to learn how other groups that had started off with two or three people now have membership in the hundreds. The meeting was an invaluable learning experience with workshops and discussions covering a range of subjects that aided us in the formation of the CSSA.

I would like to thank these other patient advocacy groups for setting examples and for support and advice. Special thanks to the Wegener's Granulomatosis Association who so warmly welcomed us into the vasculitis support group community. From them I learned how effective a patient advocacy group can be. I continue to rely on Joyce Kullman, Executive Director, for her down to earth advice and generous support of the CSSA. Her interest and support has been invaluable.

Bruce Macdonald is associated with the WGA and is a whiz at keeping track of research and news items of interest to those of us with vasculitis. We all appreciate his efforts.

I was able to attend the 2004 Wegener’s Symposium in Cleveland and met some of the distinguished doctors engaged in vasculitis research. Thanks to Dr. Gary Hoffman, Dr. Ulrich Specks, Dr Nabih Abdou, Dr. Carol Langford, Dr. Wolfgang Gross, Dr. John Stone, Dr. Ronald Falk and Dr. Peter Merkel for taking the time to speak with me and for their interest in our fledgling Association.

Special thanks to all the wonderful doctors who form our Medical Advisory Board. These doctors are leaders in their fields with many demands on their time. We greatly appreciate their support and encouragement.

Thanks to Dr. Andrew Churg, our special Consultant, for his work and interest in Churg Strauss Syndrome. We also honor and thank his father, Dr. Jacob Churg and as well as Dr. Lotte Strauss, for defining Churg Strauss Syndrome which led to a better understanding and more effective treatment of the disease process.

Our web designer, Steve Morin of edesignerz.com, has been patient with my lack of technical knowledge and generous with his time. He has my utmost appreciation.

The Board of Directors has been phenomenal in helping to create this resource. Dr. Carol Kavanaugh was enthusiastic about the project from the start and has contributed greatly of her time, money and effort. Without her, there would be no CSSA. Cindy Smoot spent countless hours researching and writing even when she had great demands on her time due to the illness of her daughter, who has CSS. In addition, Cindy has been supportive and encouraging in every way. Thanks to Darlene Koykar who is willing and eager to share her knowledge of publicity, sponsorships and public relations, and to Naomi Andres who has generously agreed to help develop an informative pamphlet based on one she has used to explain CSS to friends and family. Thank you all.

This is just a beginning. We hope to continue to grow and evolve to further meet the needs of Churg Strauss Syndrome patients and their families.

Thanks to all!
Jane Dion, Co-Director
Churg Strauss Syndrome Association