The conference was incredible, bringing together scientists and advocates. As one doctor said: "Putting a human face to CIB was very important." Advocates had the opportunity to tell his version of events, that was the point of view of the patient experience of IBC.
We have many reasons to celebrate 2008, IBC community. Among the most important was the First International Conference on the IBC, held December 5 to 7 in Houston.
Consider for a moment the importance of this event from a single witness or participant. It was quite an evening, when we began to gather in a large conference room at MD Anderson Cancer Center. You could feel initial discomfort, as the attendees spoke several languages, but they seem to know a little among themselves.
The host, Dr. Massimo Cristofanilli, requested each participant to introduce themselves and could only imagine what it felt like being in a room with doctors and scientists literally around the world (Africa North America, Europe, Japan and Australia) and among many supporters.
We were all meeting for the first time to discuss how they could collaborate in research to accelerate understanding of the CIB. We started with two hours of intense debate and participation of our hopes for this conference and what could achieved, and in the end we all agree and inflammatory breast cancer, the World Alliance was born.
Even with all the excitement and thrills of this event then moved to the official opening of the meeting. This was a separate event itself seemed to be perfectly together to give a vision of science and humanity (the doctors saw through the eyes of patients and patient advocates) in this amazing world of IBC.
Dr. Barsky was the scientist who provided a vision as articulated in the depth of the disease that was difficult to understand for some, but very compelling and full of hope. The most emotional moment was the narrative point of view of the IBC MDA clinic followed by the presentation of the "Beat It" Award Patty Jennings, a lawyer and patient breast cancer. His amazing work with her husband, Senator Tim Jennings of New Mexico has provided much needed seed money that has contributed to the success the clinic. Everything has a beginning has aroused incredible ultimately different groups to step up to the plate and provide more funding.
The days continued to be a mixture of emotion and science. Each scientific session was introduced by either a survivor or a supporter. Patients and advocates sat in the same conference room with scientists and doctors. Michelle Esteban, KOMO TV reporter and I talked about the "inconvenient truth" of how the media has been at the forefront of educating the masses and many doctors about the misinformation on the IBC and discussed the contribution information and knowledge of this disease.
Drs. Levine and Bondy introduced a series of lectures on the epidemiology of the IBC in northern Africa Europe and possible association with a virus. It also seems clear that there is still confusion about the clinical diagnosis of IBC and much more to do.
The scientific presentations gave an overview of current and past achievements, but also provided clear evidence of many research efforts are ongoing. There were 50 posters on display in support of these research efforts. Pretty amazing for such a rare disease and careless?
The last day conference several medical leaders in the field of CIB, and a few supporters (including myself) met in a conference room to discuss the preparation a consensus that summarizes the guidelines and future research. It was a historic moment for the IBC community.
Patti Bradfield, President
The Inflammatory Breast Cancer Foundation
Inflammatory Breast Cancer Q & A - Dana-Farber Cancer Institute
