Kathy Giusti and the Multiple Myeloma Research Foundation
What do you do when your rising professional career is cut short by an unexpected cancer diagnosis? Kathy Giusti shifted careers, built a new organization that transformed how cancer research is done, and now faces the challenge of sustaining the organization and its funding for its newest venture.
Since she was first diagnosed with multiple myeloma (MM) in 1996, Giusti had led an effort to better understand and treat the disease. She had co-founded the Multiple Myeloma Research Foundation (MMRF), helped form the Multiple Myeloma Research Consortium (MMRC), and brought together a diverse body of academics, researchers, pharmaceutical and biotech companies, physicians, and patients to combine their efforts around the disease. The MMRF had helped facilitate clinical trials for promising drugs, sponsored research, and raised a substantial amount of money for these purposes.
In 2014, the MMRF was in the midst of its CoMMpass program; a multi-year effort to collect tissue samples from 1,000 patients at key junctures in their disease, sequence these samples to better understand the genetic underpinnings of MM and its many sub-types, and thus enable researchers to study a comprehensive sampling of patients. CoMMpass also had a patient-facing element which allowed the patient community to communicate with one another and with professional moderators. By mid-2014, some 550 patients were enrolled and 85 hospitals were participating.
As a non-profit, the MMRF had historically relied on donations to fund its research operations. Giusti wanted to find a way to ensure a reliable revenue stream for the organization and give it greater financial stability. The MMRF had historically given away its resources and knowledge for free in order to speed research; Giusti worried if charging for some of its functions would be at odds with its mission and historical practices. She worked with her executive team to examine potential sources of revenue, and to decide if this was the right thing to do.
health care outcomes;
Cancer care in the U.S.;
Giving and Philanthropy;
Health Care and Treatment;
Growth and Development Strategy;