Our History

In 1997 - 1998 …

Rufenbarger, a breast cancer patient advocate, attended a Progress Review Group (PRG) meeting held at the National Cancer Institute (NCI). The group convened to examine the status of breast cancer research and identify factors that could be impeding progress.

One of the recommendations the group made was that to understand cancerous behavior it was important to first understand normal tissue.

Fast forward to 2004 …

A meeting of the Amelia Project was held in Indianapolis, gathering basic science researchers and clinicians together to learn from one another about what was needed in breast cancer research.

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 from the NCI where she might obtain such samples.

The NCI speaker informed her there weren't any such samples readily available, and that she would never get any, because anyone who has them keeps them to themselves. Rufenbarger, who was also in attendance, was dismayed upon hearing this and started developing a plan to change the situation.

She called on Dr. Anna Maria Storniolo, an IU medical oncologist 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 IU research fellow Dr. Bryan Schneider, (now a world-renowned medical oncologist and researcher at IU). He needed to collect some normal control blood samples for a specific project.

Dr. Storniolo and Rufenbarger worked with the IU Center for Bioethics and the university’s Institutional Review Board (IRB) to allow Dr. Schneider to collect samples on one day at the Indianapolis Race for the Cure by encouraging the Indy Race participants to donate their blood.

The event was so successful that Dr. Schneider collected all the samples needed for his project in just one day.

Around this time, breast surgeon Dr. Susan Clare joined the effort, contributing a customized database she developed while working in Germany. For several years, Rufenbarger and Drs. Storniolo and Clare worked together to get the tissue bank up and running.

The biorepository was initially called Mary Ellen’s Tissue Bank, named for a patient of Dr. Storniolo who died at a young age. Her family was instrumental in raising money to get the tissue bank off the ground.

The past 10 years…

The KTB has traveled around Indiana and to several other states, always with the goal of diversifying its banked samples. Tissue collection events have been held in Fort Wayne, Lafayette, Bloomington, and Evansville within Indiana, as well as in Louisville, Chicago, Houston, Detroit, New York City, Phoenix, and Orange County, Calif.

About the Susan G. Komen Tissue Bank

The Komen Tissue Bank is the only repository in the world for normal breast tissue and matched serum, plasma, and DNA. We are transforming breast cancer research by offering normal, high-quality, richly annotated tissue samples to scientists worldwide.

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