Diane Palmieri, Ph.D. Wins Grant to Study IBC can Metastasize to the brain
October 16, 2009 the IBC Research Foundation in cooperation with the Milburn Foundation awarded a grant to Diane Palmieri, Ph.D. to study how inflammatory breast cancer (IBC) can metastasize to the brain. Dr. Palmieri, who is a National Cancer Institute staff scientist, is working with mouse models to understand how IBC progresses. Her work is part of a Department of Defense Center for Excellence project devoted to learning more about breast cancer brain metastasis.
In the IBC Research Foundation newletter, Ginny Mason, the Executive Director, says, "Inflammatory breast cancer, a less common and potentially deadly form of breast cancer, remains a poorly understood disease. While general breast cancer research has provided some insight, specialized study of inflammatory breast cancer and its aggressive metastatic nature is essential. Dr. Palmieri's proposal was selected from a pool of outstanding submissions receiving high marks for its relevance and translational potential."
The story behind this grant fascinates me. Ten years ago Ginny Mason, an IBC survivor, and Owen Johnson, a widower whose wife had died from IBC, met for lunch in Alaska. They knew each other from their participation in the Pete Bevin and Menya Wolfe's support list, but this was their first personal meeting. Owen was concerned that little research was being done specifically on IBC. Researchers tended to avoid the disease because of its comparative rarity despite the fact that a disproportionate number of breast cancer deaths were IBC patients, but Owen was convinced that understanding how IBC spreads could lead to greater understanding of all types of cancer metastasis. He started the IBC Research Foundation to address the problem.
Ginny describes the IBC Research Foundation as a "kitchen table organization." They keep overhead costs at an incredibly low four to six percent by being mainly a volunteer organization, but in ten years they have achieved amazing accomplishments. The Foundation's website provides a major source of accurate information on IBC and links to research articles. A team of volunteers answers the 75-100 questions that come into the website every month. People without a computer can call 1-877-786-7422 and leave a message with a real person at an answering service. Volunteers return 30-50 calls a month to answer questions and provide support.
Representatives of the IBC Research Foundation regularly attend major conventions of professional cancer organizations and set up booths at some of them with information about IBC. All too often an IBC diagnosis is missed because doctors have not seen a case before and are unfamiliar with the symptoms, so spreading the word to medical professionals that not all breast cancer starts with a lump is an important part of the foundation's mission.
In 2005 the Foundation started a BioBank of tissue samples and their associated medical records that researchers can use in their study of IBC. Ginny and the other foundation workers have learned how to deal with all the legal and medical issues involved in setting up the BioBank. An institutional review board reviews all of the ethical and privacy safeguards for the BioBank, which received a 2006 award from the National Breast Cancer Coalition fund for "Best Practices in Breast Cancer Advocacy Awards."
The persistence and dedication Owen, Ginny, and the other volunteers have shown have paid off in increased respect in the cancer community. They speak frequently at cancer conferences and symposiums, and their contacts are leading to better awareness of IBC in both the medical community and the public.
Using examples of women who did not receive optimum treatment because there were no separate guidelines for IBC in the National Comprehensive Cancer Network (NCCN), Ginny encouraged NCCN to develop specific guidelines for doctors treating IBC patients. Dr. Robert W. Carlson of Stanford University announced these at the 2008 San Antonio Breast Cancer Symposium. In an interview focusing on the guideline changes for 2008, Dr. Carlson said this of the new IBC guideline, "Any cellulitis [redness/swelling] of the breast that occurs in a non-gravid [non-pregnant], non-lactating [not breastfeeding] woman should be assumed to be inflammatory breast cancer until biopsy proves otherwise."
Ginny says, "We are indebted to Dr. Carlson, and the panel, for providing treatment guidance to those in the general oncology community and for his strong statement to his colleagues regarding this difficult to diagnosis cancer." Because of these new guidelines, many more doctors will perform the biopsy that may save a woman's life.
With this history of cooperation between IBC Research Foundation and major cancer organizations, it is no surprise that when the Milburn Foundation wanted a partner to fund an IBC research study, they contacted the IBC Research Foundation.
After reviewing applicants for this grant, the foundation chose Dr. Palmieri. Ten years ago Owen Johnson, Ginny Mason, and the other people at IBC Research Foundation knew little about raising money, writing grants, or speaking to doctors at medical conferences. They were just ordinary folks who wanted to see an end to the suffering IBC causes. They have already provided information and support that has helped IBC survivors all over the world. They are laying a foundation of research that will bring a day when they won't be needed any more.