After her fighting own battle with breast cancer, Caroline Johnson was dismayed to learn that metastatic disease is dramatically underfunded by traditional pink fundraising efforts. Twisted Pink is the organization she founded out of sheer determination to offer hope to the patients who need it most. 

She is not a woman to shy away from a challenge. Caroline Johnson’s youngest child, Michael, was born with a rare chromosome deletion that results in vision and hearing loss, epilepsy, autism and requires extremely specialized care. After his diagnosis, she quit her job and became his toughest advocate, serving on the board of his vision impaired preschool and educating herself on his condition and needs.

It is not surprising, then, that when this devoted mother of three received a stage 3 cancer diagnosis a few years later, her first concern was not herself. “I thought, ‘Oh my god, how am I going to take care of this little boy?’” she says. “And when I learned that there was so little research on metastatic cancer, I decided that I had to do something about it. I had to be able to say that if my cancer returns, I have done everything I can to be there for him.”

What Johnson had discovered through her sudden immersion in breast cancer research was that the great successes that have been achieved through massive infusions of donations in some areas of cancer research were not matched by the same outpouring for metastatic cancer. Only seven percent of money raised to fight cancer goes to metastatic research.

Accustomed to clearing life’s hurdles and armed with a background in both accounting and advocacy for her son, she took action. She formed Twisted Pink in an effort to take the hope inspired by so many pink ribbons and extend it to those diagnosed with the deadliest cases of breast cancer. “ I reached out to  friends to join the board, secured a bunch of people to help with our first event, a masquerade ball, and we were off,” she says. “I also met with Laura McGregor, founder of Hope’s Scarves, who was recently diagnosed with metastatic breast cancer. She was instrumental in helping me get Twisted Pink off the ground.”

The mission of the group was crystal clear: “The only thing we were going to do is fundraise for research for metastatic breast cancer,” she says. The first Twisted Pink gala in 2014 raised over a hundred thousand dollars and it was earmarked for a cancer research project at the University of Louisville. “There is a researcher there doing incredible work on metastatic cancer,” says Johnson. Each year, the Masquerade Ball has grown and other fundraisers have emerged along the way. “We do a tennis pro-am at Springhurst in November and a pink fashion show at Oxmoor in October,” she says. “People hear about the cause and they want to help.”

With the growth of the organization comes new determination to make sure the money goes where it can do the most good. “We recently formed a collaboration with other metastatic fundraisers including The Cancer Couch and Hope’s Scarves in order to be able to share research about recipients and have more fundraising power,” says Johnson. “As a result, we were able to apply for a matching grant with $600,000 raised by the collective group so we had $1.2 million to donate to Memorial Sloan Kettering.”

These fundraising successes make a world of difference to the handful of researchers devoting themselves to an area of need that has been all but overlooked. “A lot of times, the message of awareness can be twisted,” says Johnson. “We are dealing with people and not just pink. And we are making sure that every dollar we raise goes to fund research that will help those patients who aren’t helped by traditional awareness organizations.”

Posted on 2018-10-03 by Christine Fellingham