When Kathy Giusti was diagnosed with multiple myeloma, a rare and fatal cancer with “limited research funding, no effective treatments, and few clinical trials in the pipeline” in 1996, she knew she wanted to beat the odds.
The life expectancy of someone with her disease was just three years, so Giusti — a pharmaceutical exec and mother of one at the time — immediately took action.
With her identical twin sister Karen Andrews, a corporate attorney, Giusti founded the Multiple Myeloma Research Foundation (MMRF) in 1998. Since then, the foundation’s website says they have helped establish “innovative, collaborative research models in the areas of tissue banking, genomics, and clinical trials” which are “dramatically accelerating the pace at which lifesaving treatments are brought to patients.”
Her leadership and work with the MMRF has earned Giusti many prestigious awards and recognitions, including the 2013 Personalised Medicine Coalition Leadership Award and The American Association for Cancer Research Centennial Medal for Distinguished Public Service. In 2011, Giusti was named to the “TIME 100” list of the world’s most influential people, and in 2014 she ranked No. 19 on Fortune Magazine’s “Worlds 50 Greatest Leaders” list.
In a recent interview with Adam Bryant of The New York Times, Giusti said she “became a much better leader when I was given a death sentence in 1996.”
Giusti, who has an MBA in general management from Harvard Business School, continued:
“I had always been disciplined and had this level of urgency. But then I was told I had a fatal disease and I was going to die. It was black and white — write your will. It wasn’t like there was any grey area. And I had a 1-year-old daughter. I thought that if I can stay alive until she turns 5, maybe she’ll remember me. That was my dream.
“So I started taking on this foundation, and thinking, I’ve got to make some decisions, and I’ve got to make them quickly. It was just me starting out, working at a desk in our bedroom.”
She told Bryant that because she was told she “only had three years at the most,” she was driven to get as much done as she could, as quickly as possible.
“I was incredibly bold. If anybody was going to be mad at me for what I was doing, I didn’t really care. And if I had to make a decision, I wasn’t going to sit there and say, well, let me do more research on that. I had to make decisions incredibly quickly,” she explained.
She said she also learned to be more grateful.
“When you’re working in multiple myeloma, nobody’s ever heard of it, and it takes you half an hour to explain it. By that time, people’s eyes are glazing over. So now I had to raise money around it. When people actually responded to me and my personal story, I was so grateful.”
Today, the MMRF is the world’s top private funder of multiple myeloma research, and it has raised over $275 million since its inception.
Giusti, now the mother of a 20-year-old daughter and 17-year-old son, underwent a stem cell transplant in 2006 with her sister Karen serving as her donor. With the help of the drugs the MMRF developed, she has remained in remission ever since.
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