Metastatic Breast Cancer Alliance
The inflammatory breast cancer patient community includes those with both stage III and stage IV disease. Patients with stage IV, metastatic disease, often face different issues and have additional needs, than patients whose disease has not progressed.
To better serve the needs of stage IV patients, the IBC Research Foundation joined the Metastatic Breast Cancer Alliance in early 2014, shortly after its formation. This collaboration involving a variety of nonprofit organizations, individual members, and industry partners gives us the opportunity to be involved in projects specific to metastatic disease in a way that wouldn’t be possible on our own. An example is the Breast Cancer Brain Metastasis project Breast Cancer Brain Metastasis Initiative – Metastatic Breast Cancer Alliance (mbcalliance.org) where we bring the IBC voice to the discussions.
The mission of the MBC Alliance enhances the work of the IBC Research Foundation by providing opportunities to advance research, improve access to quality treatment and care, as well as empower through education.
The Milburn Foundation is a private charitable corporation that structures joint profit/non profit organization initiatives that are empowering progressive inflammatory breast cancer research, triple negative breast cancer research and more.
Our collaboration goes back to 2008. As organizations committed to improving outcomes for those with aggressive breast cancer, a strategic partnership made sense. By 2009, the Inflammatory Breast Cancer Research Foundation provided a research grant to Diane Palmieri, PhD of the National Cancer Institute, with support from the Milburn Foundation. This was followed by a series of six additional grants focused on inflammatory breast cancer, provided by the Inflammatory Breast Cancer Research Foundation, with support from the Milburn Foundation.
Inflammatory Breast Cancer Research Foundation, Susan G.Komen and the Milburn Foundation.
The IBC Collaborative or IBC Focus Group (officially The Susan G. Komen-IBCRF IBC Collaborative, in partnership with the Milburn Foundation) is committed to accelerating research and improving care and outcomes for people with IBC. The three organizations first collaborated developed in a matching gift campaign in 2016 to raise funds specifically for inflammatory breast cancer research. The first match campaign supported three innovator awards. (link to grant page for Innovator grants)
By 2020 the partnership between the three organizations raised more than $3.4 million dedicated to inflammatory breast cancer research.
IBC has historically lacked a formal, objective medical definition, resulting in IBC often being misdiagnosed or missed altogether. In spite of continued educational efforts, this problem persists. Together the three organizations (IBCRF, SGK and Milburn Foundation), convened a team of IBC clinicians, researchers and advocates to address this long standing issue. Not only are we planning a strategy for IBC research going forward, we are addressing this diagnostic problem.
Thanks to the tireless efforts of its members, this group of experts developed a set of common diagnostic criteria for defining IBC (diagnostic scale), which was published in the journal Breast Cancer Research and Treatment, “Inflammatory breast cancer defined: proposed common diagnostic criteria to guide treatment and research.” This proposed IBC Scoring System is intended to increase diagnostic accuracy, guide treatment decisions, and inclusion in clinical trials, as well as aid basic research by standardizing biospecimens used in IBC research. Establishing a definition of IBC is critical to reduce the incidence of misdiagnosis currently all too common. In addition, it is essential that biospecimens used in IBC research meet the same criteria. The collective work has been presented at the San Antonio Breast Cancer Symposium (poster session 2019) prior to the journal publication.To validate the IBC Scoring System, using funds raised by the IBC Collaborative, In 2022, the IBC Collaborative awarded a grant to Dana Farber Cancer Institute and MD Anderson Cancer Center, supporting collaborative work at two of the largest IBC centers in the world. (link here to the grants page)
The IBC Collaborative is working to improve diagnosis, drive scientific discoveries, and looks to accelerate research that will provide the greatest benefit to patients, getting us closer to finding more effective treatments and saving lives.
Universidad Central del Caribe – School of Medicine
Inflammatory breast cancer isn’t limited to the U.S. and it’s important to work with people in other countries to help raise awareness of the disease and foster research. When Michelle Martinez-Montemayor, PhD, from the Universidad Central del Caribe-School of Medicine in Puerto Rico, was looking for advocacy involvement in a proposed research project she was directed to IBCRF. That initial connection grew into a longer term collaborative effort as Dr. Montemayor’s IBC research has continued. Thanks to Dr. Montemayor’s work, trainees in her lab have become interested in IBC research.
Currently we’re working with Dr. Montemayor as well as a post-doc in her lab on an ASPIRE research project to increase awareness of IBC and better understand Puerto Rican patients’ signs, symptoms and experiences of the disease. The idea is to then to compare similarities and differences to learn from their patients, understand the Puerto Rican IBC population and share that with the larger IBC community.