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photographs by bruce plotkin. MMRf photographs are contributed.
Twelve years ago Kathy Giusti was diagnosed with multiple myeloma and given no more than three years to live. Since then she’s raised more than $100 million for research and this month will celebrate Christmas with her family.
On a sunlit day in late summer, toilet paper flutters in the breeze, draping Kathy and Paul Giusti’s usually pristine New Canaan home. The traditional welcome accorded rookie team members by New Canaan High School’s varsity cheerleaders honors their daughter Nicole, who, fresh from Saxe Middle School, has just made the squad.
Meanwhile, a victory barbeque for David Giusti’s Cal Ripkin all-star baseball team is scheduled for later that evening. Coached by Paul, New Canaan’s ten-year-olds came in eighth in the nation after a summer of intense competition. Paul waves happily to his wife before heading into the kitchen to cook chicken drumsticks for what will be a major celebration. Cheerleaders, a dad and his son playing baseball — what looks like a perfect slice of suburban Americana is not quite that simple. “I have to pinch myself to believe this is real,” Kathy says. “I never thought I would live to see my daughter start kindergarten.”
Diagnosed with multiple myeloma in January 1996, when Nicole was eighteen months old, Kathy, then age thirty-seven, was told she had from three months to three years to live. David, today’s baseball all-star, was conceived after the diagnosis. “I so badly wanted my daughter to have a sibling,” Kathy says, “and my disease was still inactive.” When they got the medical go-ahead, Paul did not need to be persuaded. “Being pregnant was a ray of sunshine during those dark days,” Kathy recalls. Their son’s birth in May 1997 was life triumphant in the face of a looming death sentence.
At that time Kathy was a senior executive at the former G.D. Searle & Co. and knew her way around the pharmaceutical landscape. It didn’t take her long to confirm that research was at a standstill — there were no drugs in the pipeline for multiple myeloma.
Seeking answers, the first person she called was her identical twin, Karen Andrews, who did not have the disease. According to Dr. Ken Anderson, director of the Jerome Lipper Multiple Myeloma Center at Boston’s Dana Farber Cancer Institute, the sisters’ situation is very uncommon. A comparison of their plasma cells revealed genes that are identical. “But sort of like a circuit box, certain ones are turned on and others off in each twin,” he says.
Karen, an attorney who lives with her family in Greenwich, and Paul supported Kathy until she was able to help herself. When word got out, there was a groundswell of support from friends and neighbors who kept calling, wanting to know how they could help find a cure. A fundraiser in October 1997 raised more than $450,000.
A few months later, in 1998, the sisters established the Multiple Myeloma Research Foundation (MMRF) to jumpstart a more aggressive approach. “Our goal was to get new drugs approved,” Kathy says. “Back then many foundations were very touchy-feely, more into offering support groups and sending out newsletters; we wanted to address the science of it and the process.”
Now, a decade later, Kathy and Paul look back on those early days with a sense of profound appreciation for what they call “the sheer humanity” of the town they live in. “New Canaan was behind me from the very start,” Kathy says. “You don’t get things done by yourself; people lift you up and then the impossible becomes achievable.”
Kathy was convinced that a much more aggressive approach was needed. In 2004 she created the Multiple Myeloma Research Consortium (MMRC) despite outspoken opposition to what was then the radical idea of getting researchers and major medical centers to share information. “People told her it would never work,” Karen says. “They said she was crazy to try.”
Being both cancer patient and groundbreaker was stressful, but Kathy felt she had no choice. “Nobody really understood how broken the system was for research and drug development in oncology,” she says, pointing out that it still takes much too long to get a new drug to market. “Meanwhile, people, especially those with uncommon cancers, are dying.”