Vin Kampf remembers the day he got the call. It was six years ago and his parents were on the other end.
“Uncle Bill has pancreatic cancer,” they told him.
In the years since, Kampf’s connection to the devastating disease has only grown, both in losses — two of his friends’ mothers died within months of their diagnoses — and in advocacy, as program director of Project Purple, a non-profit organization dedicated to raising funds and awareness.
But at the time of that phone call, the Southampton native knew next to nothing about pancreatic cancer.
“I was like, ‘Oh, he’ll just go get chemo and everything will be fine,’” Kampf recalled. “And then you open up Google and you type in those words and, six years ago, it was an 8 percent survival rate — and you start seeing names like Steve Jobs and Patrick Swayze, all these famous people are passing away from it, too. So it was hard.”
Today, that celebrity list includes Alex Trebek, Ruth Bader Ginsburg, Aretha Franklin, John Lewis, Alan Rickman and others. And of the 60,430 people diagnosed with pancreatic cancer annually, only 10 percent survive.
To shine a light on pancreatic cancer and remember those lost, Project Purple lit up four East End locations purple last week — the World War Memorial in Agawam Park and the Windmill Lane Firehouse in Southampton, the North Sea Firehouse, and the Bridgehampton Fire Department — in an effort to raise awareness for the third-leading cause of cancer-related deaths that has no early detection or cure.
The light-up initiative launched during Pancreatic Cancer Awareness Month on November 18, which was World Pancreatic Cancer Day, explained Kampf. They remained aglow through last Wednesday with the goal of inspiring passersby to get curious, ask questions and donate to the cause — while reminding patients that they are not alone.
“Hopefully it touches at least one person,” Kampf said. “If one person is affected by this disease and they can see that light and learn about us and learn about what we do, and we can do something to support them, it makes it all worth it.
“It’s really just turning a light on,” he continued. “It’s like with everything: Until it touches you, you don’t really know how drastic it is.”
According to the American Cancer Society, pancreatic cancer accounts for approximately 3 percent of all cancers in the United States, but about 7 percent of cancer deaths. Early pancreatic cancers typically do not cause any signs or symptoms — and by the time they do, they have often grown very large or spread outside of the pancreas.
“Nine out of 10 people diagnosed have a five-year survival rate — and the majority of them don’t even last a year,” Kampf said. “It’s hard, hard, hard to talk about that. I went through it, I know. I didn’t want to talk about it with my uncle.”
Bill Kampf, who worked as a carpenter in East Hampton, had been struggling with lower back pain before he went to see a doctor, who immediately diagnosed him with pancreatic cancer after looking at his scans, his nephew said. Other symptoms can include jaundice, abdomen pain, weight loss and poor appetite, nausea and vomiting, blood clots, and diabetes — but more often than not, these signs do not surface until it’s too late, Kampf said.
“Testicular cancer, you can feel it. Skin cancer, you can see it. Breast cancer, we have mammograms, you can touch it and you can feel it — awesome, we can do those things,” he said. “But with pancreatic, there’s no signs or symptoms until it’s stage 4 and progressed.”
Before Bill Kampf died just nine months after his diagnosis, he saw his daughter get married and spent as much time as he could with his loved ones, his nephew said. “It was tough to see the family go through that,” he said, “and just how fast it took him.”
As part of its efforts, Project Purple helps fund research for early detection and finding a cure — currently in partnership with Beth Israel Deaconess Medical Center, Tufts Medical Center and University of Nebraska Medical Center — but it is a consistent uphill battle, Kampf said.
“We’re coming off of the New York City Marathon, where we raised close to $400,000,” he said. “But then you get a phone call that someone is battling and they need financial assistance, or someone we gave financial assistance to had just passed. You go from these highs to lows to highs to lows.
“At the end of the day, even with those emotional rollercoasters, it’s been one of the most rewarding things I’ve ever been a part of,” he continued, “and I don’t foresee myself leaving it until we find a cure, or an early detection test that can help people live longer.”
The second branch of Project Purple’s support comes through its Patient Financial Aid Program, which assists all applicants with medical, pharmaceutical and everyday living expenses. The organization also sends out free care packages to anyone fighting pancreatic cancer, in its mission to improve the lives of patients and work toward a world free from the disease.
“We don’t want to be doing this job in five years,” Kampf said. “But we’re here, we’re fighting for it, and one day, we’ll have early detection. One day, we’ll have a cure, I’m sure of it. It might be slow, it might take some time, but we’re gonna get there.”
For more information about Project Purple, visit projectpurple.org. To donate, visit donate.projectpurple.org/campaign/shine-a-light-on-pancreatic-cancer/c368811.