Inflammatory breast cancer advocacy

Advocacy: the act or process of supporting a cause or proposal

What else have we done in the last twenty-plus years?

  • Worked with researchers preparing grant proposals related to IBC research.
  • Served as consumer advocates for the Congressionally Directed Medical Research Programs (CDMRP), Breast Cancer Research Program (BCRP).
  • Placed IBCRF bookmarks in public libraries and other public spaces.
  • Mailed out t-shirts, pins, bookmarks and brochures. [We no longer have shirts or pins, but still send out bookmarks and brochures. Order those here (link)
  • Communicated with small groups about IBC.
  • Replied to questions received on the Contact Us form. (add link)
  • Volunteered time and talent for the Focus on IBC newsletter, the website, our brochures and bookmarks.
  • Participated in Research Advocacy Network‘s Advocacy Institute training.
  • Attended conferences to learn more about cancer and to share IBC information.

See a few examples of individual IBC advocacy efforts by many supporters over the years. Find more on the Take Action Now page (add internal link) Share your efforts, by contacting us. (link)

Phyllis helped organize Carolina IBC in 2005, an informal group of people who meet annually.
In 2020, the Carolina IBC group met virtually.
Volunteers staffed IBCRF exhibit booths at professional meetings and conferences. This photo was taken at ASCO
Phyllis Johnson speaking with a concerned caller to our toll-free hotline 1-877-STOP-IBC (1-877-786-7422). Photo by Channing Johnson.
Brenda shared a personal photo essay of her IBC experience on this website. Read One Woman’s Journey with IBC. (add link)
Photo of Meg Senuta
Writer Meg Senuta shared her personal IBC experience on this website, and in our Focus on IBC newsletter. Link to her story.
Ginny Mason and Phyllis Johnson addressed students at North Carolina Central University about IBC and worked with them on plans for outreach to minority communities.
Jennifer Cordts has shared her personal IBC journey with media outlets (TV stations, magazines, newspapers) and social media sites.
Several Board members have attended the National Breast Cancer Coaltion’s Project LEAD® to learn about the science and politics of breast cancer. Phyllis demonstrates what she learned about interpreting statistics.