It’s true we’re new and we’re small when compared to cancer groups that have been active for many years; but what we lack in age and size is more than made up for in our many substantial accomplishments in a short period of time.
- A group of volunteers participated in a vigorous effort on behalf of advanced breast cancer patients in Canada that resulted in Hoffman-La Roche returning to offer the cancer drug Herceptin on a compassionate use basis prior to its approval for use by the Canadian government. The drug manufacturer had halted offering Herceptin in what many believed was an attempt to put pressure on the Government to hurry its approval process.
- We collaborated with a pathologist at the National Cancer Institute in a pilot program to provide tumor tissue of IBC patients available at the time of their mastectomy. That pilot program proved the research utility of such tissue, and the mature program now has alliances directly with hospital surgeons.
- Volunteers of the Foundation frequently review and offer comments and questions on draft manuscripts and research presentations.
- We have alerted researchers of multiple cases of IBC in the same family, something that had previously not been known to occur.
- We identified and brought research attention to a cluster of IBC cases in an office environment. In the span of just ten months three of twenty-four ladies in the office were diagnosed with IBC. We have participated in the independent review of these cases and the epidemiological research of that event, for which a manuscript is in preparation.
- We participated in the planning of a Phase II clinical trial for newly diagnosed IBC patients which includes an experimental anti-angiogenesis drug since IBC is known to be a highly angiogenic cancer, and are now actively making newly diagnosed IBC patients aware of this clinical trial to assist in the accrual of patients; the sooner all patients are accrued, the sooner researchers will know the value of early treatment with an anti-angiogenic drug for IBC patients.
- We participated in the planning of the IBC patient-based Registry, which has achieved its initial funding. The Foundation is prepared to inform IBC patients about the IBC Registry and their ability to submit their medical records to help research as soon its accrual procedures have been reviewed and approved.
- We have compiled a list. “IBC: What do we know,” of peer-reviewed journal articles and poster presentations dealing principally with basic research aspects of IBC; the contents of this list are updated frequently since as new articles or poster abstracts are made public they are added to the list. This list is made available to researchers and interested parties as a means to increase their understanding of IBC while demonstrating just how little is really known about the most aggressive type of breast cancer.
- We have compiled a list entitled “IBC: What we want to know” as a means to clearly convey our Vision. The contents of this list are updated as needed to reflect new discoveries and new research methods that affect “what we want to know.”
- Of the many hundreds, perhaps thousands, of breast cancer brochures and booklets available from many long-established organizations, one did not exist about inflammatory breast cancer. The Foundation has now printed close to 200,000 brochures “Knowing the Symptoms of Inflammatory Breast Cancer may save your life.”
- Now that it is possible for those with IBC to locate others in their city or regional area, many in the “IBC community” have met in person, individually, or as a group. Such meetings have occurred all over the country in homes, train stations, airports, restaurants, hospitals, and at breast cancer “race/walk” events.
If you’d like to know more about any of these accomplishments please contact us.
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