About
Empowering patients & fostering research
Since 1999, our volunteer-led nonprofit has served as the country’s leading organization dedicated solely to supporting people living with inflammatory breast cancer. We empower community members to achieve their best and most equitable outcomes by providing the latest knowledge – and by partnering to foster innovative, patient-focused research.
Mission
Our mission is to improve the lives of those touched by inflammatory breast cancer through the power of action and advocacy. We do this by fostering innovative IBC research, educating stakeholders, and tirelessly advocating for both patients and survivors.
Goals
We work as a patient-powered and research-driven national nonprofit to ignite interest in IBC research, and support an improved clinical / pathological definition of IBC. We also work to raise awareness and educate people on IBC, with the aim of improving outcomes by encouraging people to seek medical care as soon as possible and empowering health care providers to minimize time from diagnosis to treatment.
Support Our Work
As a 501 c(3) nonprofit corporation, we have no dedicated corporate sponsors but rely on small voluntary donations, grants from private foundations, and other non-recurring sources of income. In a typical year, between 92% and 95% of all donations directly support our mission and goals.
Our Story
President Ginny Mason shares the story of how the IBC Research Foundation was founded, and how it grew as a patient-guided nonprofit that advances research and empowers stakeholders.
Board of Directors
Ginny Mason
Executive Director
Ginny, a Registered Nurse, was diagnosed with inflammatory breast cancer in 1994. Since then she has been a tireless educator and advocate for inflammatory breast cancer. In addition, she squeezes in time with her grandchildren whenever possible.
Phyllis Johnson
Vice President
Since her diagnosis with hormone-receptor negative, HER2 positive inflammatory breast cancer in 1998, Phyllis has been active in various on-line IBC support groups. A retired teacher, she enjoys time with her grandchildren, traveling, and volunteering with the Inflammatory Breast Cancer Research Foundation.
Bryon Davis
Bryon’s aunt Kathy Milburn-Williams was diagnosed with triple negative inflammatory breast cancer in 2006. It didn’t take long for the family to conclude that more IBC research was needed. Bryon has worked since 2007 to fund and build collaborations that support IBC research through the Milburn Foundation.
Dawn Aubel
Tresurer
Dawn Aubel is a nurse practitioner with extensive experience in enhancing patient engagement in research and development. She has a strong commitment to integrating patient insights and preferences throughout the research continuum, particularly in the area of breast cancer and its impact on quality of life.
Shawn Scott
Secretary
Shawn was diagnosed with Inflammatory Breast Cancer (HER2-, HR/PR+) in February, 2022. Like many, she had never heard of the disease and now tells her story to anyone and everyone who will listen in an effort to spread awareness. Shawn joined the board in 2024. She is a practicing attorney and yoga enthusiast. Shawn lives in Indianapolis with her husband, three children, and a menagerie of adorable pets.
Sarah Zimov
Sarah, VP, Medical Director at Publicis Groupe, is a neuroscientist who has spent her career dedicated to translating science into solutions in support of better patient outcomes. In 2015, she was diagnosed with Inflammatory Breast Cancer (IBC) at a young age. Since then, she has been devoted to raising awareness of the diagnosis and treatment of rare cancers.
Mary Alpaugh
Mary is a research scientist who has been studying inflammatory breast cancer (IBC) for the past 25+ years. Her research has resulted in the identification of several novel features of IBC. Her focus is understanding the unique metastatic nature of IBC in the pursuit of efficacious therapeutics. In her limited spare time, she enjoys perusing a good bookstore.
Thelma Perry Brown
Thelma Brown is a passionate breast cancer research advocate, with a particular focus on addressing disparities in Black women and advancing research. Driven by her experience as a two-time survivor, as well as the diagnosis of her mother and five sisters, she dedicates her time to raising awareness of the unique challenges faced by underserved communities and promoting equitable access to screening, treatment, and clinical trial participation. Thelma is also a strong proponent research aimed at understanding the basis of disparities and development of more effective, less toxic interventions for all diagnosed with breast cancer.
Thelma has been involved in patient and research advocacy nearly 20 years
Officers
President: Ginny Mason
Vice-President: Phyllis Johnson
Secretary: Shawn Scott
Treasurer: Dawn Aubel
Past Members of the Board of Directors
Inflammatory Breast Cancer Research Foundation thanks the following people for their time and talents generously shared over the years since the organization was founded in 1999:
Owen Johnson, Founder & President Emeritus
Bee Johnson
Nancy Johnson
Debbie McKinney
Gayla Little
Laurie Isenman
Pat Haugen
Anya Silver
RK VanOrsdahl
Amy Berman
Roy Moore
Carol McWilliams
Medical Advisory Board
Sunil S. Badve, MD, FRCPath
Vice Chair for Pathology Cancer Programs and Professor in the Department of Pathology and Laboratory Medicine at Emory University School of Medicine. He is a surgical pathologist and a translational researcher with expertise in breast cancer and thymic pathology.
Sunil S. Badve, MD, FRCPath | Winship Cancer Institute (emory.edu)
Olufunmilayo F. Olopade, M.D.
Walter L. Palmer Distinguished Service Professor of Medicine and Human Genetics; Associate Dean, Global Health; Director, Center for Clinical Cancer Genetics, The University of Chicago Medical Center, Chicago, IL. Clinical interests include: breast cancer in young women, women with a family history of breast or ovarian cancer, breast cancer associated with pregnancy, and inflammatory breast cancer.
Dr. George Sledge, Jr. MD
Executive Vice President and Chief Medical Officer of Caris Life Sciences. He oversees medical affairs, research, and medical education, including oversight and leadership for the Caris Precision Oncology Alliance™, and Caris’ global team of Medical Science Liaisons.
Patricia Steeg, PhD
Deputy Chief, Women’s malignancies Branch and Senior Investigator at the Center for Cancer Research, National Cancer Institute in Bethesda, MD. Areas of expertise: breast cancer, metastasis, brain metastasis, metastasis suppressor genes, dormancy, blood-brain barrier.
Danny Welch, PhD
Professor, Department of Molecular & Integrative Physiology, University of Kansas’ KU Medical Center. Research interest: the mechanisms by which tumor cells acquire the ability to metastasize.
Denise Yardley, MD
Assistant Director, Breast Cancer Research, Sarah Cannon Research Institute at Tennessee Oncology. In this role, she serves as principal investigator on numerous breast cancer clinical trials.
The Inflammatory Breast Cancer Research Foundation thanks Medical Advisory Board Members Emeritus, Douglas J. Schwartzentruber, M.D., FACS, associate director of clinical affairs at the Indiana University Melvin and Bren Simon Cancer Center (retired) and John H. Barton, M.D. of Tennessee Oncology (retired) for their years of service.
