Inflammatory breast cancer collaborations

Inflammatory Breast Cancer Research Foundation, has an active presence at many national oncology meetings since its founding in 1999, and we continue to collaborate with numerous organizations. Often our representative is Ginny Mason, our Executive Director. Her years of advocacy experience and medical background give her an advantage when it comes to keeping up and speaking up on topics like new medications, clinical trials, and the needs of patients.

American Association for Cancer Research (AACR)
Ginny Mason recently participated as an Advocate Mentor in the AACR Scientist <->Survivor Program (SSP). Large scientific research conferences can be overwhelming when advocates are new to the field. The Scientist <->Survivor Program was designed to bring together experienced advocates and researchers to work with small groups of newer advocates in navigating the meeting, researching specific topics, and helping them get the most out of the sessions. Meetings with the FDA (Food and Drug Administration), and special sessions on personalized medicine are a bonus. The Scientist <->Survivor Program is a great way to learn more about basic science research and advocacy. Interested? Learn more.

SWOG (formerly known as Southwest Oncology Group)
The National Cancer Institute oversees a network of clinical trial groups. SWOG has committees focused on a specific cancer or areas related to cancer care. As a member of the SWOG Breast Committee, Ginny brings an advocate voice to clinical trial development. She is also part of the Digital Engagement Committee, a new group exploring the role of various technologies and social media in clinical trials. During the spring meeting, Ginny spoke on the importance of reducing toxicity in treatment without losing efficacy. This is an arena where we are able to bring the treatment needs of inflammatory breast cancer patients to people who are developing trials.

Translational Breast Cancer Research Consortium (TBCRC)
Inflammatory Breast Cancer Research Foundation also brings its advocacy voice to TBCRC, a collaborative group of 19 institutions founded to conduct innovative, high impact, biologically-driven translational and clinical research in breast cancer. Each institution has one advocate representative and Ginny Mason represents Indiana University Simon Cancer Center. With Dana-Farber Cancer Institute, Duke Cancer Center and MD Anderson Cancer Center each having a specific inflammatory breast cancer focus, this group has already opened one IBC specific clinical trial. When TBCRC met recently, inflammatory breast cancer remained a high priority with discussion of two more trials in the development phase.

Inflammatory Breast Cancer Focus Group
The IBC Focus Group is one aspect of our collaborative effort with Susan G. Komen and the Milburn Foundation. Bringing inflammatory breast cancer thought leaders together to discuss diagnosis challenges, as well as research priorities, is an important step in the research process.