I was supposed to live, at best, 3 years: a myeloma foundation

She had graduated from Harvard Business School, and was on the fast track for a leadership position at Searle, the pharmaceutical giant. For four years, Kathy Giusti oversaw the marketing of Searle’s arthritis drugs. In 1995, at age 37, she was married, and had an 18-month old baby girl. In December that year, seeing her doctor for help in getting pregnant again, she learned she had myeloma, a cancer of plasma cells found in bone marrow.

She met with seven myeloma specialists and received contradictory advice. She ultimately chose the most conservative approach, partly because she greatly wanted another baby, and didn't want toxic drugs to interfere with her conception and pregnancy. "I put a plan together, and I went through the whole I.V.F. program to get pregnant."

By 1997, she had quit her job at Searle, and had given birth to a healthy boy.

The previous summer, she had attended a patient seminar sponsored by the International Myeloma Foundation. The foundation's directors asked her to be on their board. She agreed, and wrote a business plan for them. "But I was challenging them about where they were heading and what they are doing with research and funding research. [They were] getting annoyed with me. So they booted me off the board."

In October 1997, she and her sister held a dinner for wealthy friends near her new home in Connecticut, to raise money for myeloma research. It must have been quite delicious; they raised $450,000. She distributed most of it to research, and used the rest to set up the Multiple Myeloma Research Foundation.

She realized that in order to accelerate the development of new myeloma drugs, she needed to foster greater collaboration between researchers and different academic institutions. In 2002, she decided to assemble a consortium of scientists who would be required to submit their research proposals to a steering committee for approval, and to publish their results jointly. In exchange, the scientists would receive access to a tissue bank of myeloma blood cells and bone marrow, as well as administrative and organizational support for lab tests and clinical trials.

Since 1998, the foundation has raised $92 million. Since 2001, 21 drugs derived in part from research funded by the foundation have entered clinical trials, and eight are now in Phase 2 – a track record that pharmaceutical companies would envy.

Dr. Ken Anderson, Kathy's doctor, says, "Myeloma is now a paradigm for new drug development, because of partnerships that occur between academics, large pharmaceutical companies, small biotech, the FDA, the National Cancer Institute, and foundations. And, frankly, Giusti's foundation has been a catalyst that created the urgency and awareness to make this progress possible."

Kathy had a bone marrow transplant in 2006, and her cancer is in remission.

Advice to people struggling with grave diseases: Take heart from Kathy's example, and help as much as you can.

Browse for related stories in the index at the very bottom of this page, or read a story about a similar visionary nonprofit health entrepreneur hero.

Thanks to Dr. Jerome Groopman for the source article in the Jan. 28 issue of the New Yorker.