Rubber Chicken, Coffee and Pajamas???
by R.K. VanOrsdal

In 1998 a friend was diagnosed with IBC. Amid the horror of believing she would die (thankfully she did not), we both looked for whatever information on this disease we could find. She went to the internet and I went to my mother’s nursing books. We found the scholarly information woefully lacking but did find a support group online.

At the same time, Owen and Marilyn Johnson were dealing with the advancement of her IBC disease, and then Marilyn died in September 1998.  From the spark of her death a fire was lit. Through the online support group, a circle of people coalesced around Owen Johnson and the very first IBC foundation was created–one that supported both research and advocacy. The first board meeting took place in a member’s dining room and included a rubber chicken and people wandering around in pajamas and drinking coffee. Among the silliness, the fire lit the room and the Inflammatory Breast Cancer Research Foundation was born.  The mission was to find a cause, facilitate research and provide a platform for advocacy and education. A 501(c)3 was applied for and received from the IRS.

Because the foundation has no formal office, we met each other piecemeal. Ginny Mason, a newly graduated BS in nursing, met Owen Johnson in Alaska while Ginny and her husband were on vacation. Marilyn Kirschenbaum, Lee Smith and RK VanOrsdal met on a Christmas jaunt in Ottawa and ended up designing the first brochure. Owen Johnson, Ginny Mason, Gayla Little, Becky Rosen, Debbie McKinney, and Bee Johnson (Owen’s mother) met at either ASCO, NBCC, or the San Antonio Breast Cancer Symposium.

Owen Johnson spent much of his time finding and contacting researchers. In the beginning we combed state death records only to find that IBC deaths were attributed to breast cancer or metastatic breast cancer, not IBC. A toll-free call line was set up; a website was created; a research advocacy group was formed, this newsletter was begun, and a medical advisory board was established. When it became important to have a source of tissue for researchers, the IBC Research Foundation Biobank and Clinical Data Base was born.

Initial funding came to the Foundation as a gift from Mr. Johnson. Individuals did fundraisers. There were bowling tournaments, golf and softball games. Jewelry was made and sold. Donations came in “memory of” or “in honor of.” A large donation came through the efforts of a family in New York via United Way, another from a behest. Our reputation grew and the Milburn Foundation asked the IBC Research Foundation to award grants to facilitate research in triple negative IBC through a multi-year partnership. We continue to provide an award winning brochure and bookmark for those who want to share “you don’t have to have a lump to have breast cancer,” and other services.

Fast forward to 2013, and Board meetings have moved from the dining room table to more economical conference calls. Owen Johnson’s involvement came to an end with his own health concerns. The Inflammatory Breast Cancer Research Foundation continues under the leadership of Ginny Mason, Executive Director; RK VanOrsdal, vice president; Laurie Isenman, secretary/treasurer; Carol McWilliams, Phyllis Johnson and Pat Haugen,who make up the Board of Directors.