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We only met a few times in real life, but each time our paths crossed those moments were filled with joy. As anyone who met or followed her knows, Sheila knew how to shine…with her smile, her eyes, her open heart, and her love of sparkly things. If I remember correctly, the first time I saw her in person involved a pink tutu, a magical headband, and lots of glitter. Sheila never held back on sharing her experience, her insights, and her vision for making things better for all patients, but, particularly for Black women.

Sheila achieved many incredible things and sought out extraordinary experiences. It is no small feat that God’s Grace: The Sheila Johnson Story was made forever preserving her messages of faith and inspiration.

Anyone who met Sheila knew she was intelligent, eloquent, and passionate which is why every opportunity I had to hire Sheila as a patient advocate for client panel events, advisory boards, or training programs, I took it. She brought wisdom, empathy, and honesty to every interaction. And kindness. I loved working with Sheila as she educated in an honest, but non-judgmental way. She knew how to motivate others to make changes to improve the cancer experience. She shared the spotlight with other advocates, never making it about her. She was generous with her time and her energy.

One time, during a communications training I was facilitating, someone raised a concern about asking the wrong question or saying the wrong thing. What she shared was so Sheila. Lead with love, she said. She went on to explain that if your intention to help is coming from your heart, you can’t really say the wrong thing. She told them that even if you don’t say exactly the right words, what will shine through is your intention and your love.

Sheila and I didn’t talk much on the phone. Mostly, we texted to stay in touch. I’ll always treasure this message from her last year: Photo of yellow flower with Proverbs 17:17 Quote "A friend loves at all times."And I am forever grateful that the last time we connected before she left us to rest in love and peace our messages to each other were full of love:

Screenshot of texts

Two weeks ago, at the American Association of Cancer Research annual conference, I was interviewed about being an advocate participant in their Scientist Survivor Program. The final question of the interview brought me to tears, but I talked through them anyway because we need researchers to know and remember. “What is the hardest part about being an advocate?”, the interviewer asked from the darker corner of the room behind the lens.

It is this…it is losing dear, sweet friends like Sheila. It is when our fellow advocates die from this terrible disease. It’s all the Sheilas and Jodys and Jasons and Beths and Bruces and Michelles and the Leighs. And. And. And.

Sheila, you were fierce, bold, and beautiful. Your impact as an advocate, clinical trial participant, voice for black women with breast cancer, and how you amplified the many ways #StageIVneedsmore will continue to ripple changes far into the future.

No longer will we see you sharing posts online, speaking from the stage, taking part in advocate events, or in our DMs, but you are in our hearts. Now, I will look for you among the stars in your heavenly home where, surely, you will continue to shine and sparkle.

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