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Metastatic, not alone. Spotlight on pillars of the MBC advocacy community.

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MBC advocacy community

October 13th is arguably the most important date on the Breast Cancer Awareness Month calendar for the MBC advocacy community. It symbolizes Metastatic Breast Cancer Awareness Day, highlighting a specific stage of breast cancer where it has spread to other body parts. This day, initiated by members of the Metastatic Breast Cancer Network in 2009, casts a light on the unique challenges MBC patients endure. It’s an essential distinction, as their experiences and needs vastly differ from those with early-stage breast cancer.

While early-stage breast cancer remains within the breast, MBC travels to areas like bones, liver, and lungs. The progression from early-stage to metastatic is a reality many face, with an estimated 20-30% of patients diagnosed at an early stage eventually developing MBC. While advancements in treatment have improved survival rates for early-stage breast cancer, those diagnosed with MBC face a median survival rate of just 2-3 years. This underscores the dire need for heightened awareness and focused research on MBC. 

To truly champion MBC patients, understanding their distinct challenges is critical. Many heroes in the MBC advocacy community are shining examples, turning their personal stories into powerful advocacy. These individuals, like Sheila Johnson, Julia Maues, and Abigail Johnston, have carved paths of hope, determination, and support. They’ve transformed their experiences into platforms that inspire change and raise awareness. This October 13th, we bring their stories to you, hoping to spark inspiration and action.

Sheila Johnson

Sheila Johnson’s life is the epitome of resilience. A United States Air Force veteran with 25 years of active duty, she transitioned into a passionate breast cancer advocate following her diagnosis with stage IV metastatic breast cancer. Sheila’s advocacy has a unique focus on the black community, addressing the very real racial disparities in breast cancer care and treatment. Her story of living with MBC since 2009 has been nothing short of inspiring, leading her to establish an advocacy platform championing the cause of Black men and women diagnosed with the disease. On October 19th, her incredible story will be told in a film titled “God’s Grace: The Sheila Johnson Story.” The movie aims to shed light on her transition from the Air Force post-diagnosis to her tireless work in the realm of advocacy. Through all her endeavors, Sheila exemplifies that every challenge can be turned into an opportunity to inspire and uplift.

Julia Maues

Julia Maues, diagnosed with breast cancer while pregnant with her son, has consistently been a pillar of strength in the MBC advocacy community. Her platform, “It’s Not Pink,” offers insights, while her co-founded initiative, GRASP (Guiding Researchers & Advocates to Scientific Partnerships), bridges the gap between patients and researchers. Through her tireless efforts, she has fostered an environment where patients are not mere recipients of care but active participants in the quest for better treatments and cures. Julia’s work stands as a testament to the transformative power of informed advocacy in the world of healthcare.

Abigail Johnston

Abigail Johnston’s story is one of fierce determination. Her blog,  “No Half Measures, Living Out Loud,” offers a heartfelt account of life with MBC. Abigail has emerged as a pivotal voice on social media, forging connections with advocates, medical experts, and the extensive cancer community. Through her role as the Director of Mentorship for Project Life MBC, she’s been instrumental in guiding and supporting countless individuals facing their own MBC diagnosis. Project Life, a virtual “wellness house,” is an embodiment of her commitment, offering mentorship and empowerment. Abigail’s tireless advocacy and mentorship have illuminated a path of hope, resilience, and community for those navigating the complexities of MBC. She’s provided guidance and support for many, ensuring that the MBC journey, while challenging, is never one of solitude.

The challenges faced by those with MBC are distinct and challenging. Their stories, filled with grit and passion, inspire us. But inspiration isn’t where it stops. To truly make a difference, action is needed. We invite you to be part of our Outcomes4Me MBC Advocacy community and continue the dialogue. Explore the Outcomes4Me app and connect with a supportive group of MBC patients. Together, we can navigate MBC and advocate for research to ultimately find a cure with hope and unity.

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