IBC Research Foundation: Kitchen Table Activists

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."