So How Did the CSRF Start?
In 1994, Louise Pace, now the CSRF President, sent a letter to the NORD networking list for Cushing’s explaining what she had been through with Cushing’s and her desire to start a non-profit dedicated to supporting patients with Cushing’s and raising awareness. Elaine Wolman volunteered immediately and Karen Campbell followed shortly as both agreed with Louise that with support from others, more awareness, and a quicker diagnosis, that their journey would have been much easier. Elaine was wonderful on the phone, contacting many doctors and asking them to support our efforts. Louise, working with Dr. Beverly Biller and Dr. Anne Klibanski of Mass General also contacted many physicians experienced in Cushing’s and together, their joint efforts led to the formation of the CSRF Medical Advisory Board. Elaine and Louise spent endless hours on the phone with every Cushing’s patient they could find. In April of 1995, the CSRF was incorporated in MA as a non-profit organization and our first newsletter done by Karen was published in the Fall of 1995.
After many phone conversations, Louise, Elaine, and Karen were first able to meet each other in person at the 1996 Endocrine Society meeting in San Francisco, CA. We borrowed a booth, developed inexpensive artwork and a few handout materials and exhibited at our first conference. We were so excited when endocrinologists supported our thoughts that support for Cushing’s patients was needed and followed through by referring patients to the CSRF for support through their long journey. We started with just 23 members in 1995! In the many years that followed, we remember the years of manually copying, folding, labeling and mailing newsletters, of the times when our database was kept by hand and our website was so very basic (but remember, the internet was not what it is today in 1995!) And here we are today, thanks to you, our members, and the support of many physicians. We are also very thankful to a few others who helped immensely as they were able: David Rice, Mary Brim, and Kathy Carbone.
A Tribute to Elaine Wolman
The CSRF is sad to announce that CSRF Board of Directors member, Elaine Wolman, 82, passed away on May 8, 2011 of causes unrelated to Cushing’s. Elaine had Cushing’s due to a pituitary tumor in 1994 and was successfully treated by pituitary surgery. Elaine was of part of the very beginning of the CSRF and she will be missed. While health concerns limited her ability to fully participate in the last several years, Elaine and her husband, Lane, worked on behalf of the CSRF for many years and were always there for the many Cushing’s patients that called them. Elaine firmly believed that a patient organization for Cushing’s was desperately needed and devoted time and energy to help that come into being. Her efforts will never be forgotten.