As one of the few organizations exclusively focused on funding research for metastatic breast cancer, Twisted Pink has a unique story to tell. Based in Louisville, Kentucky, the organization was founded in 2014 by breast cancer survivor Caroline Johnson. While Ms. Johnson fully recovered from her disease, she was startled to learn the statistics involving potential recurrence and the chance of developing stage IV disease, even years after recovery.
“During my treatment, I learned that too many people who get breast cancer progress to a metastatic or stage IV disease,” Ms. Johnson reflected. “I was surprised to find out that less than 10% of research funded was directed to metastatic research. I knew something had to be done to change this statistic.”
The name “Twisted Pink” signifies shifting focus from awareness to work toward a cure. “Our logo represents that we are planting a seed to change the way we approach breast cancer awareness,” Ms. Johnson shared. She recognized early on that other organizations offer quality educational programs to patients and caregivers, so she did not want to duplicate efforts. “We are strictly an organization that focuses 100% on funding metastatic breast cancer research,” she explained.
Caroline Johnson, Founder and Executive Director, Twisted Pink
As she was launching the organization, Ms. Johnson sought out breast cancer survivors, caregivers, a former researcher, and others touched by the disease to join the Board. The organization’s main fundraiser, the Masquerade Ball, was first held in 2015 and raised more than $100,000. Two years later, the event more than doubled its proceeds. In the 3 years since the organization was founded, Twisted Pink has raised enough funding to award grants to investigators totaling $440,000. The 2018 Masquerade Ball will be held on January 13, 2018, at The Seelbach Hilton in Louisville, Kentucky.
In 2018, Twisted Pink will become one of the Conquer Cancer Foundation’s (CCF) newest supporters of a Young Investigator Award. “Researchers have many different paths to choose from when deciding a research focus,” Ms. Johnson shared. “Twisted Pink wants to inspire a young investigator to dedicate his or her career to metastatic breast cancer research so that we can decrease the number of lives lost.” CCF’s rigorous peer review grants process was a strong factor in Twisted Pink’s decision to direct its research funding through the Young Investigator Award program.
We are strictly an organization that focuses 100% on funding metastatic breast cancer research.— Caroline Johnson
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While its funding is restricted to research projects, Twisted Pink believes that awareness of stage IV breast cancer needs to increase. “According to the Metastatic Breast Cancer Alliance, 61% of people know very little about metastatic disease,” she explains. “You can’t really do something when you know so little about it!” Toward that end, Twisted Pink seeks to partner with similar, like-minded organizations and is an active member of the Metastatic Breast Cancer Alliance.
“The Conquer Cancer Foundation is honored to work with Twisted Pink in encouraging further research in metastatic breast cancer, which has been significantly underfunded,” said Nancy R. Daly, MS, MPH, CCF’s Executive Vice President and Chief Philanthropic Officer. ■
For more information, please visit twistedpink.org.
© 2017. American Society of Clinical Oncology. All rights reserved.