These are heady times in cancer research. Studies exploring the human genetic code and the spread of cancer cells are yielding treatments individualized for each patient. New information technology is helping doctors put innovations into practice. And while women are generally underrepresented in the sciences, many are at the forefront of this particular fight. Here are four major players you should know about—and how they might help you and your family live longer.
Speeding Up the Pace of Cancer Research
Kathy Giusti, Cofounder and chief executive, Multiple Myeloma Research Foundation, Norwalk, Connecticut
Kathy Giusti was a 37-year-old marketing executive at a pharmaceutical company when tests done as a prelude to fertility treatments yielded terrifying news: She had multiple myeloma, a rare blood cancer with a median survival time of three years. “The future looked pretty grim,” recalls Giusti, whose daughter, Nicole, was then a year old. Few treatments for the disease were available, and there were no—zero, zip—new ones in the pipeline. “The doctors told me, basically, ‘Get your life in order.’ But I was determined to live like I was going to live, not like I was going to die. So I didn’t change my plans to have another child. I was interviewing oncologists and fertility doctors at the same time.” Her son, David, was born 16 months after her 1996 diagnosis.
Giusti knew that if she was going to beat the odds, she would have to do something dramatic, and she would have to do it fast. Only 24,000 Americans are diagnosed with multiple myeloma every year, making it too rare to interest most researchers and pharmaceutical companies. “I quickly discovered that scientists go where the funding is, so I knew I had to start a research foundation,” Giusti says. “If you don’t raise money and provide research grants, you’ll never attract scientists, and if scientists aren’t working on a cure, there isn’t going to be a cure.”
Her friends, family and colleagues wanted to donate money, but there weren’t any places for it to go. “We needed a way to accept the money and a plan to put it to good use,” says Giusti’s identical twin sister, Karen Andrews, a lawyer (she has not developed multiple myeloma). The sisters started small by creating a community fund inside a bigger foundation, the New York Community Trust. “I provided the legal work, and Kathy had the perfect skill set to make it happen,” Andrews says. “She’s a marketing genius and also knew where and how to use the money, because she had so much experience in the pharmaceutical industry.”
After a couple of years, the foundation informed them they were growing so fast they should go out on their own. So in 1998, just two years after Giusti’s diagnosis, the sisters organized a
large fund raiser to launch the Multiple Myeloma Research Foundation (MMRF), based in Norwalk, Connecticut. Today about a third of the foundation’s funding comes from events. “They are labor intensive, but you have to do them to raise awareness,” Giusti says. Another third of the money comes from donations, and the remainder is from pharmaceutical, biotech and diagnostic firms.
Remarkably, Giusti remained relatively healthy for the first seven years of the foundation’s operation. “I was lucky,” she says. Ultimately she went through a couple of targeted experimental drug regimens that were developed through MMRF’s efforts. “When I got really sick and needed a stem cell transplant, I was fortunate to have a twin sister as the donor,” says Giusti.