Raising our voices to advance IBC breakthroughs
Because many people do not know about IBC, our advocacy work is especially important to educate the public and the medical community about the disease. Advocacy work can take many forms.
Vice-President Phyllis Johnson speaks with a concerned caller to our toll-free hotline, 1-877-STOP-IBC (1-877-786-7422). Photo by Channing Johnson.
Although we never give medical advice, we support patients through our toll-free phone line, website contact form, and social media groups. We can provide factual information about the disease and suggestions for knowledgeable IBC experts near the patient’s home.
In 2005, VP Phyllis Johnson helped organize Carolina IBC, an informal group of people who meet annually.
Because IBC is not common, many people have never met anyone else with the disease. We take every opportunity to bring people together in person or virtually. Jennifer Cordts leads an IBC support group at her local hospital.
President Ginny Mason and Medical Advisory Board member Sunil S. Badve, MD, shared a scientific poster on a collaborative research initiative at the San Antonio Breast Cancer Conference.
Learning & networking
Conferences are an important way researchers and people in the medical community exchange ideas. The IBC Research Foundation shares information at these conferences.
IBC Research Foundation members often have opportunities to speak to researchers and educators. Because many of our Board members have learned about the science and politics of breast cancer through the National Breast Cancer Coalition’s Project LEAD® we can speak with authority on the topic.
Ginny Mason joined the Good Morning America news broadcast on Metastatic Breast Cancer Awareness Day to spread the word about IBC.
Through our newsletter, website, and public speaking we spread the word about both our personal stories with IBC and advances in research.
Join us in advocacy by sharing your IBC story with your clubs and social circles, and educating people using our brochures or bookmarks about IBC.