Julia Maues and Sheila Johnson, patient advocates

The Health Design Podcast

Julia Maués was diagnosed with breast cancer in 2013 while pregnant. Following the birth of a healthy baby boy, Julia did tests she couldn’t do while pregnant and discovered the cancer had spread to her brain, liver, and bones. After many treatment setbacks, her cancer began to respond to treatment. After adjusting to this new reality, she made it her mission to use this “bonus time” to make an impact in the lives of others dealing with cancer and consequently creating something positive out of a very tragic experience. She has found meaning and purpose in working with patients and researchers to make cancer research more patient-centered, innovative, and inclusive. Julia is a co-founder of GRASP, a program connecting researchers and patient advocates, and elevating patients as a critical voice in the research process as the experts in living with cancer. She’s also a member of a patient-led effort to shine a light on dosing for therapies given to metastatic breast cancer patients, therightdose.org. Lastly, Julia is very passionate about using her privilege as a white woman to work towards ending disparities for patients of color, especially Black women with breast cancer. She is a founding member of the #InclusionPledge and has pledged to not participate in advocacy initiatives, conferences, panels, projects, that don’t include the perspective of patients of color. At age 43, Sheila Marie Johnson — a retired Air Force Senior Master Sergeant and mother of one was diagnosed with stage IV HER2-positive, hormone receptor-positive breast cancer in December of 2009. Since being diagnosed with metastatic breast cancer, Sheila has undergone many aggressive treatments including a bilateral mastectomy and many rounds of chemotherapy. She is an alumnus of A Fresh Chapter with trips to India and Kenya and is a Young Advocate for Living Beyond Breast Cancer Young Women's Initiative Program. Sheila is a consumer reviewer for the Department of Defense Breast Cancer Research Program and METAvivor, where she reviews proposals for funding and she is a member of the Patient Insight Board for Medidata. Sheila is a facilitator and a Board Member for Breast Cancer Recovery and a 2020 participant in the Escape to Thrive Leadership Conference. She's a Komen Scholar and on the Komen Advocates in Science Steering Committee. Sheila is featured in a Pfizer documentary called A Story Half Told and featured in Breast Cancer Wellness Magazine. Her platform raises awareness about black breast cancer and the health/racial disparities that exist against black women/men in the medical community. She dedicates her life’s mission to her mother and father, Dillard and Grace Johnson.