She Turned Her Darkest Moment Into a $2M Research Legacy. And She’s Not Done Yet
After surviving her own battle, Caroline Johnson created Twisted Pink, a nonprofit organization providing funding and support for those living with metastatic breast cancer. Image: Submitted
When Caroline Johnson completed treatment for cancer in 2014, she knew she needed to do more than wear a pink ribbon in October to mark her journey. After learning the harsh realities of metastatic cancer and the relatively small percentage of research funds dedicated to the deadly disease, the mother of three founded Twisted Pink, a nonprofit organization that has funded 15 research initiatives to date and raised more than $2 million for metastatic breast cancer research. We caught up with the Louisville advocate to talk about finding purpose in the face of adversity, the people who inspire her, and why there’s still so much work to be done.
You were diagnosed with Stage three estrogen-positive breast cancer in 2013. What did you learn from your own cancer journey?
Breast cancer is not the “easy cancer” some people think it is. Yes, treatment and awareness have come a long way, but there are still so many realities that are misunderstood. The journey is filled with physical pain, emotional turmoil, and a significant impact on family life. I completed standard care of treatments, including chemotherapy, radiation, a clinical trial, and surgery.
Once the initial shock of the diagnosis wore off, I became aware of the brutal fact that about 30% of women diagnosed with early-stage breast cancer face metastatic disease, where the cancer can spread to other parts of the body. There is no cure for metastatic breast cancer. Those who develop it remain in treatment until the treatments fail and there are no other options.
What inspired you to create Twisted Pink?
Despite the fact that around 30% of early-stage breast cancer patients are later diagnosed with metastatic breast cancer, only 7% of research funds from the government and private foundations support metastatic cancer research.
I wanted to do more to increase this funding and awareness of the need. In the past 10 years, we’ve donated more than $2 million to research initiatives aimed specifically at metastatic cancer treatment. It was in a very dark time of my life that I found my calling.
What has been your biggest challenge in creating and leading Twisted Pink? What keeps you going?
The biggest challenge is operational funding and wanting to hire staff without the necessary funding to fully support the work. The people living with metastatic breast cancer and their lived experience are what keep me going.
Sometimes I think about closing the doors because I am concerned about making a large enough impact, but I receive the most impactful messages. Advocacy work has given me a great purpose. It’s a daily reminder that there is still so much to learn and so many lives to impact.
If someone has just received a devastating diagnosis, what would you like them to know?
You are not alone, and there are people who are walking the same path. There are also organizations like Twisted Pink working to improve your quality of life. Your experience matters, and you can use your voice for good.
Image: Submitted
The need for more research is so great; how do you decide what to fund?
Twisted Pink has a great partnership with Conquer Cancer, the ASCO Foundation. They administer our grant RFPs and conduct the peer-review process. Twisted Pink reviews the top two grant recommendations from the peer review to make a final decision on which project or projects will be funded. We only fund research that will advance understanding of metastatic breast cancer.
Which Twisted Pink achievement are you most proud of?
I am most proud of our collaborations with other nonprofit organizations and the amount of funding we have donated in support of metastatic breast cancer research since 2015, which is over $2 million.
What’s your favorite way to spend an afternoon?
I love to dine out and, on nice days, garden, do yard work, or walk outdoors. I also love to spend time shopping at vintage estate sales.
Where do you go to get inspired?
I am inspired by many things. Mostly, the people living with a terminal diagnosis like metastatic breast cancer and still seem to live life with purpose and joy.
What is something people might be surprised to learn about you?
When I was diagnosed with breast cancer, I felt equipped to navigate the very complicated medical system because I had spent years as a caregiver and advocate for my son, who was born with a rare genetic deletion.
Michael was diagnosed with BBSOAS [a rare genetic disorder that affects brain development and vision] when he was 3 years old. He is now 21 and is nonverbal, has Level three autism, epilepsy, and developmental delays. I continue to be his advocate and share our story to help others with developmental disabilities find resources and care.
When you aren’t working, where can we find you?
Playing mahjong, golfing, walking, reading, or simply spending time with family.
What’s your best piece of advice?
Do what you love and love what you do. Life is too short!
LIGHTNING ROUND
What three things are always on your grocery list? Macadamia nuts (my son is on a keto diet for epilepsy), avocados, and coffee.
First stop when you want to impress an out-of-towner? The Parklands of Floyds Fork
What’s your go-to cocktail and where? A French Martini from Volare on Frankfort Avenue.
What’s a Louisville restaurant dish you can’t get enough of? The Chicken Parm from Volare.
Last great book you read? I can’t say I have read a full book in a while. I will, however, be purchasing Beyond the Pink by Eleonora Teplinsky, MD, and reading it cover to cover when it’s released!
Want to join the cause? You can show your support at the Chunkin Pumpkins event, held at Captain’s Quarters on October 11, and the Unmask the Cure gala on October 30 at The Galt House.
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Beth Clayton
For over 20 years, Beth Clayton has either been working in a newsroom or pitching one. A natural storyteller and word nerd from the moment she could pick up a pencil, she earned her journalism degree from Butler University and spent the next decade as a writer, reporter, and editor. She now lives in Louisville, KY with her husband, three kids, and a very bad dog, and loves immersing herself in old lady hobbies such as houseplants and macrame.
