Twelve years ago, three women were separately in search of the same thing: camaraderie as their families were shaken by pancreatic cancer. Two were grieving the loss of loved ones and the other was supporting someone in the throes of a tough battle. They had joined a popular nationwide online discussion forum, and to their surprise, they discovered they lived just a few miles apart in the Rochester suburbs.
They started meeting for coffee, eventually forging a grassroots regional organization for those who are passionate about turning pain into action. The Pancreatic Cancer Association of Western New York (PCAWNY) was born in 2009. Today, it remains an eclectic collection of volunteers with diverse skills and common goals: engineers, teachers, nurses and medical personnel, marketers, business managers and administrators, and retirees, aiming for better diagnosis and treatment of this devastating cancer by funding research and providing advocacy, awareness, and education.
As their network expanded, the three PCAWNY founders — Mary Pettinaro, Lynn Platt, and Judy Rockafellow — began building a relationship with the Wilmot Cancer Institute.
Early on, they worked with Aram Hezel, M.D., the chief of Hematology/Oncology at Wilmot and an expert in pancreatic cancer and other gastrointestinal malignancies, as well as Hucky Land, Ph.D., deputy director of Wilmot and a research leader.
Land says the group influenced Wilmot to engage more actively with the community and to raise the bar to combat pancreatic cancer.
“They pushed us and incentivized us to strengthen our research activity,” Land says. “As a result, we have recruited additional scientists and it created a snowball effect of attracting even more researchers with a shared interest in collaborating on pancreatic cancer. In a way, they started an avalanche.”
PCAWNY Executive Director Mary Ellen Smith describes Wilmot’s doctors and researchers as “strong and forward-thinking.”
“They give us credibility and they are part of our drive and passion,” she says. “At the same time, we’ve become a driving factor for them. It’s just a beautiful relationship built on shared goals.”
When PCAWNY was established, the five-year survival rate for pancreatic cancer was five percent, Smith recalls. Since then, the survival rate has risen to about 10 percent, although it depends on the stage of cancer at diagnosis and other factors.
“We appreciate everything the doctors do, and the more we learn about research it allows us to feel hopeful,” Smith says. “A lot of people think doctors are unapproachable but we don’t see that. They step up any time we’ve asked for updates on their work so that we can inform our supporters, or for any request we make of them, such as speaking engagements. They want to get rid of this disease as much as the rest of us. We have a shared passion that drives us both.”
PCAWNY has donated $770,000 to Wilmot so far — including its $500,000, five-year pledge made in 2015 toward establishing a Pancreatic Cancer Center of Excellence at Wilmot. The group’s fundraising events include an annual “Step It Up! Cure Pancreatic Cancer 5K Walk” in the fall and a summer golf tournament in memory of Michael F. Contestabile.
Donations are often used toward pilot studies at Wilmot, with the goal of producing preliminary data to secure larger scientific grants. One of PCAWNY’s earliest gifts, for example, led to a $2 million basic science award for investigating how to stop or slow pancreas tumor growth. More recently, PCAWNY pilot funds have supported work toward NCI grants for new immunotherapy clinical trials for some pancreatic cancer patients.
PCAWNY funds have been used to recruit top new talent, such as Stephano Mello, Ph.D., who is investigating pancreatic cancer biomarkers, and Darren Carpizo, M.D., Ph.D., who joined Wilmot in 2020 and was named chief of Surgical Oncology at the University of Rochester Medical Center, where he also runs a translational science lab and co-leads Wilmot’s Genetics, Epigenetics and Metabolism research program.