Having spent the previous seven years caring for her son, Michael, who was born with special needs, she knew her way around the medical field pretty well. She used her skills to research her options and get the information she needed. But she was dismayed to learn that the information on metastatic breast cancer wasn’t readily available to the women who needed it.
Once she finished her treatment – which included a lumpectomy, then mastectomy, then chemotherapy and radiation – she focused her energies on creating an organization that raises funds for research on metastatic breast cancer.
“I wanted to make a bigger impact on the people who were dying of breast cancer,” she said. She learned that 40,000 U.S. women a year die of breast cancer, and that that number has stayed the same for 30 years. “Why is that the case? I got angry about it. You put a pretty pink ribbon on something that’s not pretty at all.”
According to the National Institutes of Health, of the funds raised to support breast cancer, only 2 to 3 percent is used to fund research for metastatic breast cancer. Of those diagnosed with early-stage breast cancer, 20 to 30 percent will experience metastasis.
In response, Johnson created Twisted Pink. “A lot of things are twisted about the message of breast cancer. I understand the hope, but I didn’t understand the survivorship,” she said. “Early detection can spare you from chemo and radiation, but doesn’t mean that (the cancer) won’t come back. You hear about five-years (survival statistics) and a lot of people think that after five years you’re cured, but you’re really not.”
In its first year, Twisted Pink raised $100,000 and donated that to the James Graham Brown Cancer Center to help fund the research of Dr. Yoannis Imbert-Fernandez, who is doing research on estrogen-positive breast cancer.
In its second year, Twisted Pink has raised $150,000 and is in the process of determining where to distribute those funds. Funds are kept in Kentucky for now, but that may change depending on the growth of the organization.
“I wanted to do something radical,” Johnson said. Twisted Pink is 100 percent volunteer-based. “I think that’s really important. I don’t want to take money from an organization (for salaries). My purpose from breast cancer is to do something to impact breast cancer research. I’m very spiritual and faith-based, and feel like this is my calling.”
Johnson was inspired by the struggle of Jill Conley, a breast cancer victim whose breast cancer journey was chronicled in the Courier-Journal. Conley died in February.
“I would go out to chemo and I would see (Conley) on the front page of the paper, and it would scare me to death,” Johnson said. “But I would read the stories two or three times because I wanted to understand. She and I had a lot of similarities: in our stage of diagnosis, she was young, I was 39. I wanted to understand what it meant for me and what it meant for her and other people like me.”
Twisted Pink’s mission is to provide hope for women and men living with terminal illness, fund metastatic breast cancer research and provide true breast cancer statistics, Johnson said. “I want people to remain hopeful and understand we haven’t found a cure for breast cancer, and we’re no closer than we were 30 years ago.”
While $250,000 is an impressive amount to raise in only two years, it’s a drop in the bucket for research funding. Twisted Pink will continue to raise money with events and outreach.
The next event is October 20 at Oxmoor Center. The Pink Woman Fashion Show is free and begins at 6:30 p.m., with a VIP Party at 5:30. The $40 VIP ticket includes wine, hors d’oeuvres, preferred seating for the fashion show, a swag bag and a speech by Johnson. The event is sponsored by Today’s Woman and Oxmoor Center, All Women OB/GYN, Blades Salon & Spa and Regis Salon. The show will be in the Macy’s wing.
Johnson is now cancer-free after several years of surgery, medication, clinical trials and awful side-effects. But her positive outlook helps her move forward: “I’ll take that over cancer.” VT
For more information, visit TwistedPink.org.
By Lisa Hornung, Contributing Writer