In the collective effort to create a world free from breast cancer, every story, every experience and every voice matters. One such voice that has been pivotal in shaping the narrative and enhancing awareness about breast cancer inequities is that of Marian Johnson-Thompson, Ph.D., a retired professional from the National Institute of Environmental Health Sciences, adjunct professor of maternal and child health in the School of Public Health at UNC Chapel Hill, professor emerita of biology at the University of the District of Columbia, and a longtime volunteer with Susan G. Komen.
Marian’s journey paints a picture of unwavering commitment to ensuring equity and representation in breast cancer research and awareness. Her own brush with breast cancer came unexpectedly, serving as a profound turning point in her life and further solidifying her resolve to volunteer and advocate for breast cancer awareness. Following her annual mammogram, she underwent surgery to remove a suspected mass in her breast tissue. The mass ultimately proved not to be breast cancer; instead, she had twisted mammary ducts.
“In addition to my own experience, I had a maternal aunt and a maternal uncle who passed away from breast cancer,” Marian shared. “While I had been looking at breast cancer from far away, having this occur in my family and my own experience brought me closer to the subject.” This personal connection fueled her passion, driving her to make significant contributions to understanding and addressing breast cancer inequities, especially in the Black community.
Marian’s journey with Komen began as a volunteer, a role that later saw her become a part of the first African American Advisory Committee in the early 2000s. “When I was on that committee, I met a lot of people who had been diagnosed with breast cancer and were survivors, and I really was able to get an intimate knowledge of the issues that they faced,” she reflected. “I was the only person on the committee who had not been diagnosed with breast cancer, but I understood the fear we face during our mammograms. You’re always thinking that this may be your time to get diagnosed because so many of us are diagnosed.”
The committee became a platform for Marian to lend her voice, share her insights and contribute to a more inclusive approach toward breast cancer awareness and research. She later chaired Komen’s Advocates in Science Committee, served as a Komen Scholar and was ultimately invited to serve on the committee that developed ShareForCures, Komen’s groundbreaking breast cancer registry.
ShareForCures is designed to facilitate the secure sharing of health information for the purpose of advancing breast cancer research. By giving individuals the option to contribute their health data voluntarily, the initiative aims to accelerate scientific studies, foster collaboration among researchers and ultimately improve outcomes for those affected by breast cancer.
Marian’s advocacy work is deeply rooted in her commitment to equity and diversity. She emphasized the need for programs like ShareForCures that are accessible, ensuring that volunteers know exactly what they are participating in while maintaining their confidentiality. “We want to be sure that we are addressing the entire population,” she noted, highlighting the critical role of diverse representation in research.
Marian understands that skepticism can be a barrier to participation in research programs like ShareForCures. She emphasized the importance of helping people understand that participation is voluntary and how they can make an impact, stating, “It’s really about education.” She urged the need to convey to potential participants that involvement in ShareForCures is non-invasive and aimed at gathering information to benefit future generations and the broader population.
Marian’s vision for the future of breast cancer research and advocacy is clear – a world where breast cancer mortality is significantly reduced, and all populations are represented in research. She believes in the power of sharing stories and experiences to encourage participation, stating, “Participation helped me to make a difference.”
Marian’s journey is a testament to the power of advocacy, the importance of personal stories and the need for equity in breast cancer research. Her dedication and insights continue to inspire and shape the path toward a world where every voice is heard, every story is valued, and no one is left behind in the search to find breast cancer cures for all people. Through education, awareness and a relentless pursuit of equity, we can collectively contribute to a future where inequities in breast cancer no longer exist.
By participating in ShareForCures, individuals can join Amanda and countless others in a united effort to transform breast cancer research and ultimately save lives. Learn more about ShareForCures today.
