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Caroline Johnson, founder and executive director of Twisted Pink

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The founder and executive director of Twisted Pink talks about how she is using the organization to raise awareness about metastatic breast cancer — and give hope to those who have been diagnosed with the disease.

1- What was the inspiration behind Twisted Pink?

After finding a lump in my left breast at 39 years old and being diagnosed and treated for stage 3 hormone positive breast cancer, I became educated about recurrence rates and how little funding was being directed to metastatic breast cancer research. The documentary film Pink Ribbons Inc. was also an eye opener to me on how corporations profit by using the pink ribbon for their bottom line rather than actually funding research for a cure. Twisted Pink was started to increase funding for research.

2- What is one thing you wish people would understand about metastatic breast cancer?

Metastatic breast cancer is considered treatable, but there is no cure. Individuals diagnosed with metastatic breast cancer will be in treatment for the rest of their lives. You can’t wrap a pretty pink ribbon around this disease, and I wish people realized that 20-30% of people diagnosed with breast cancer will eventually face a stage IV diagnosis.    

3- What are some things people can do to help advance metastatic breast cancer research and find a cure?

Educate yourself about metastatic breast cancer, and support the organizations that are funding metastatic breast cancer research by making a direct impact on better treatments and outcomes. Don’t just assume that a pink ribbon on a product or affiliated with an organization is making a difference for a cure. Do your research.    

4- What do you do to keep your mental health in check?

I love being outdoors. I allow myself grace to take breaks and enjoy life to the fullest.

5- How do you unwind for the day?

Dinner with my family is always at the top of my list to unwind. Sometimes I also enjoy a walk in the neighborhood with my dog, Ruby.

P.S. Learn more about the mission of Twisted Pink.

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