The conference was amazing, bringing together science and advocates. As one doctor said to me, "Putting a human face on IBC was very important." Advocates had the chance to tell their side of the story, which was the patient point of view of the IBC experience.
We have many reasons to celebrate 2008 from the IBC community. Among the most important was the First International Conference on IBC that was held December 5-7 in Houston.
Let's reflect for a moment on the relevance of this event from a simple witness or participant. It was quite an afternoon when we started gathering together in a large conference room at the MD Anderson Cancer Center. You could feel an initial uneasiness, because attendees were speaking several different languages but appeared to somewhat know each other.
The host, Dr. Massimo Cristofanilli, called on each participant to introduce themselves and you could only imagine how I felt being in a room with physicians and scientists literally from all over the world (North Africa, Europe, Japan and Australia) and among them many advocates.
We were all meeting for the first time to discuss how we could collaborate in research directed towards expediting understanding of IBC. We started off with 2 hours of intense discussion and participation of our hopes for this conference and what could be accomplished, and at the end we were all in agreement and the Inflammatory Breast Cancer World Alliance was born.
Still with all the excitement and emotions of this event we then moved to the official opening of the meeting. This was quite a separate event itself that appeared to be perfectly put together to give a view of science and humanity (the doctors saw through the eyes of the patients and patient advocates) in this incredible IBC world.
Dr. Barsky was the scientist that provided such an articulated and in-depth view of the disease that was difficult to understand for some, but very convincing and full of hope. The most emotional moment was the narrative view of the MDA IBC clinic followed by the presentation of the "Beat it Award" to Patty Jennings, advocate and breast cancer patient. Her incredible work with her husband, Sen. Tim Jennings of New Mexico has provided much needed seed money which has contributed to the success of the clinic. Quite an amazing start which has ultimately woken different groups to step up to the plate and offer more funding.
The subsequent days continued to be a mix of emotions and science. Every scientific session was introduced either by a survivor or an advocate. Patients and advocates would sit in the same conference room with scientists and physicians. Michelle Esteban, KOMO TV reporter and I spoke on the "Inconvenient Truth" of how the media has been in the forefront of educating the masses and many physicians about the misinformation about IBC and we discussed the contribution of information and awareness for this disease.
Drs. Levine and Bondy introduced a series of lectures on the epidemiology of IBC in North Africa, Europe and the possible association with a virus. It also appeared clear that there is still confusion about the clinical diagnosis of IBC and how so much more needs to be done.
The scientific presentations made a summary of the current and past achievements but provided also significant evidence of the many research efforts which are ongoing. There were 50 posters on display to support these research efforts. Quite amazing for a disease so rare and neglected?
The final day of the conference several medical leaders in the field of IBC, plus a few advocates (including myself) met in a separate conference room to discuss the preparation of a consensus that would summarize guidelines and future research. It was quite a historical moment for the IBC community.
Patti Bradfield, President
The Inflammatory Breast Cancer Foundation
