Our History

The Susan G. Komen Tissue Bank at the IU Simon Cancer is unique in so many ways. To this day, it is the only known biorepository that collects, stores, and annotates healthy breast tissue, taken from volunteer women donors who exhibit no signs of breast cancer. The story of how the tissue bank came into existence is a wonderful mix of women fighting for the health rights of others, asking for what they want and truly believe is possible to have, and being in the right place at the right time. The following is a historical summary. If you have further interest and a little time, please read the longer version of our history, including a tissue collection event onlooker’s perspective.

Historical Summary

In 1997 and 1998 a patient advocate named Connie Rufenbarger attended a Progress Review Group (PRG) meeting held at the National Cancer Institute (NCI). It was convened to examine the status of breast cancer research and identify factors that may be retarding progress. One of the recommendations that group made was that to understand cancerous behavior it was important to first understand normal tissue. Connie participated in this group as a patient advocate, and at its close moved on to other pursuits, believing that since the NCI had convened the PRG, they would implement the changes needed to solve the identified challenges.

Fast forward to 2004… a meeting was held in Indianapolis of the Amelia Project, gathering basic science researchers and clinicians together to learn from one another about what is needed in breast cancer research. At the Amelia Project a young researcher was looking for some normal breast tissue samples to use as a control in her research, and she asked the keynote speaker, who was from the NCI, where she might obtain such samples. The NCI speaker informed her that there weren’t any such samples readily available, and that she would never get any, because anyone who has them keeps them to themselves.  Connie was dismayed upon hearing this, and started formulating a plan to rectify the situation. She called on Dr. Anna Maria Storniolo, a medical oncologist here at IU Simon Cancer Center who ran a breast cancer prevention program, to work with her to create a bank that would eventually contain breast tissue for normal controls in breast cancer research. This plan began with a small project for a Fellow, Bryan Schneider, who is now a medical oncologist here at IU. He needed to collect some normal control blood samples for a specific project. Dr. Storniolo and Connie worked with Eric Meslin of the IU Center for Bioethics and also with the IRB, to create a situation that would allow Dr. Schneider to collect these samples on one day at the Indianapolis Race for the Cure, by encouraging the Indy Race particpants to donate their blood. The event was so successful that Dr. Schneider collected all the samples that were needed for his project in that one day. As part of that project the questionnaire asked participants if they would be willing to allow their samples to be used for unspecified future research, and over 95% of the participants said they would. Armed with these results, Connie and Dr. Storniolo worked with the IRB to write a protocol that would allow blood and breast tissue to be collected for unspecified future research as normal controls.

At some point Dr. Susan Clare joined the effort. Dr. Clare was a breast surgeon who had a customized database she had developed while working in Germany. For several years Connie, Dr. Storniolo and Dr. Clare worked together to get the tissue bank up and running. Initially it was called Mary Ellen’s Tissue Bank after a patient of Dr. Storniolo’s who died at a young age, and whose family was instrumental in getting the tissue bank off the ground and raising money for it. In 2007, the trio had the opportunity to meet with the CEO of Susan G. Komen® in Dallas, at which time Komen committed $1,000,000 per year to fund the bank. At that point it was renamed the Susan G. Komen Tissue Bank at the IU Simon Cancer Center (also called the Komen Tissue Bank or the KTB), and started collecting tissue on a regular basis.

Over the next few years the staff consisted of a COO, a Biospecimen Manager, and a Database Programmer. Over time a few more positions were added. In 2011 through a series of serendipitous events, the Komen Tissue Bank partnered with the Super Bowl Host Committee, which was organizing the Super Bowl being held here in Indianapolis early the following year. This partnership resulted in a project called Indy’s Super Cure. The goal of this partnership was to collect samples from a large number of women over a two-day period, focusing on increasing minority participation in the Tissue Bank. It also held a gala that raised $1,000,000 for the Tissue Bank. Indy’s Super Cure was very successful, resulting in the collection of tissue from 665 racially diverse women in two days using about 600 volunteers, more samples than had been collected in the previous entire year. Indy’s Super Cure put the Komen Tissue Bank on a more formal path, with collection events that recruited more participants and more formalized volunteer training.

Since 2010 the KTB has been travelling out of state to conduct tissue collections, primarily because the donor population in Indianapolis is not very diverse.  The KTB has traveled around Indiana to Fort Wayne, Lafayette, Bloomington and Evansville, and also out of state to Louisville, KY, Chicago, IL, Orange County, CA, Houston, TX. Detroit, MI, New York, NY and Phoenix, AZ.  Our latest event was in Indianapolis, IN on November 16th, 2019. Our next tissue collection event will be on November 13, 2021 at the IU Simon Comprehensive Cancer Center. To date, the Tissue Bank has accepted about 140 research proposals.  We continue to inform the research community about the existence of our samples and why they are important to use in their studies.