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Learning to Fight
Courtesy Rick Sontag
In 1994, Rick Sontag (MBA 1968) was the president of Unison Industries, an aviation component manufacturer he had grown from one Midwest factory into a 1,500-employee international business. He lived in sunny Jacksonville, Florida, with his wife, Susan, and their three college-aged children. “Everything was going along just great,” Sontag recalls. “Then came the evening of June 24, 1994, and our entire earth came apart.” That night, Susan had a stroke that left her with short-term memory loss and seizures. A few months later, doctors told the couple that Susan had inoperable brain cancer. She was given three years to live.
Nothing had prepared Sontag for the experience of being a caregiver to a terminal oncology patient and making the life-or-death decisions he and his wife faced, and there weren’t many resources available to help guide him. Eventually, he found a treatment trial at the Mayo Clinic that was testing a new combination of chemotherapy and high-dose radiation. Slowly, Susan’s tumor began to shrink, until there was nothing left but scar tissue. Although she would continue to struggle with the significant loss of cognitive function caused by the tumor and its treatment, Susan had survived the unsurvivable. It was then that Sontag made a promise to himself and his wife: “If I ever get a chance to do something about this disease, I’m going to do it.”
In 2002, he had that chance. Sontag sold Unison Industries to General Electric and used a portion of the proceeds to establish the Sontag Foundation, a nonprofit dedicated to supporting brain cancer research and brain cancer patients and caregivers. The foundation’s signature initiative is its Distinguished Scientist Award. Over the last 18 years, the organization has awarded more than $35 million to 51 early-career researchers, making a long-term investment in the most promising scientists in the field.
“The grants they provided are high-octane fuel,” says Dr. Mark Johnson, one of the early recipients of the Distinguished Scientist Award. Johnson was a junior faculty member at Harvard Medical School when he received the grant. “The Sontag Foundation was pivotal in helping me design and sustain a research career,” says Johnson, who is now chair of the Department of Neurological Surgery at UMass Memorial Health and a professor at the University of Massachusetts Medical School.
In its early years, the Sontag Foundation also launched the Northeast Florida Brain Tumor Support Group. It was the resource Rick and Susan needed as they coped with her disease and its aftereffects. Once a month for the last 16 years, Rick—and often Susan—has met with other brain cancer patients, survivors, and caregivers to discuss anything and everything: medication, insurance, clinical trials, hope, and hopelessness. “We’ve had about 200 families in the group,” Sontag says. “I’ve probably attended 50 funerals.”
That personal connection is the key for Sontag. He had set out to run a different kind of foundation, one that focused on people first and the disease second. Those priorities led Sontag to spin off a new nonprofit, the Brain Tumor Network, a free nationwide resource that provides the information and support that brain cancer patients and their caregivers need to make informed decisions about treatment. To date, the Brain Tumor Network’s nurse navigators and social workers have helped more than 1,200 people around the United States.
Sontag’s people-first ethos also guides the selection of the recipients of the Distinguished Scientist Awards. “Most of science is failure,” says Sontag. “The key is picking the people with the right character, who are going to stick with it. If something doesn’t work out, they move on to a new project and continue to be creative.” If he sounds like a venture capitalist vetting an entrepreneur before investing in a startup, that’s because he is. In addition to serving as president of the board of directors at the Sontag Foundation, Sontag is the president of The Spring Bay Companies, an investment group he helped found. The Sontag Foundation also is considering launching a venture capital fund focused on the development of brain cancer technology.
Sontag thinks big. “If this model works for brain cancer, this model can work for other serious diseases,” he says of the Sontag Foundation’s multipronged approach. He envisions opening the doors of the foundation to other nonprofits that can learn from their processes, to improve life for patients afflicted with other illnesses. But the drive behind his work remains very personal. “Every day, I go home and see my wife,” he says. “I’ve been her caregiver for 25 years, and I see how our work has helped her and so many other people.”
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