It was 2pm on a Wednesday in 1996 when Kathy Giusti got the results of her bone marrow biopsy. It was multiple myeloma, a cancer Kathy had never heard of despite working her entire career in the medical field. There was little known about the disease at the time, other than it was a silent cancer of the bone marrow, there was no cure, and the average life expectancy was three years. But Kathy refused to act like her life was over. She wanted to live. And the only way she would be able to do that was to come up with some way to cure this disease.
Kathy’s first call was to the person she always turned to in times of crisis: her twin sister, Karen. Kathy and Karen, biological twins and soul mates, would now become business partners. Faced with three years to live, the two sisters had a single mission: not letting one of them die.
At the time Kathy was diagnosed with multiple myeloma, there were only two drugs to treat the incurable disease and no new treatments in the pipeline. Kathy and Karen knew they were going to have to create their own hope. That meant not only conducting research where there was none, but doing it with unprecedented speed and precision, not the usual MO of nonprofits, let alone a deeply broken medical system.
As a top pharmaceutical executive, Kathy understood the industry’s scientific potential and had the business acumen to create the plan to unlock it. As a legal advisor to one of the world’s largest media companies, Karen had the ability to turn that plan into action, from setting up the mechanisms to raise money and critical resources to establishing innovative grant programs. In 1998, they founded the Multiple Myeloma Research Foundation. What began as two young women sitting in a living room trying to fund research to keep one of them alive, ultimately became the organization that would not only save Kathy’s life but transform cancer care for millions.
What began as two young women sitting in a living room trying to fund research to keep one of them alive, ultimately became the organization that would not only save Kathy’s life but transform cancer care for millions.
Kathy’s and Karen’s vision was a first in the nonprofit world. Built like a biotech startup and run like a Fortune 500 business, the MMRF sought new business models to drive breakthrough science forward. First to build a collaborative tissue bank, first to sequence its cancer genome, and first to spearhead a clinical network that has conducted nearly 100 trials and helped launch 13 new drugs, the MMRF tripled the lifespan of patients diagnosed with multiple myeloma and transformed the way research is conducted across all cancers.
But for Kathy and Karen, the fight continues. Karen is herself is a breast cancer survivor, and she and Kathy face mortality every day, with every test result, just as every cancer patient does. That’s why they’re committed to sharing the MMRF model with other fatal diseases. When people ask Kathy why she headed to Harvard Business School to lead its precision medicine accelerator, or why she’s so focused on disparities in healthcare, it’s because she and Karen know what it means to face a diagnosis without a cure. The only way to survive is to believe you have hope. For countless patients with myeloma and other diseases without a cure, Kathy and Karen created that hope.