by Alison Cooley

Jill Fusaro turned a family tragedy into a triumph for pancreatic cancer research—providing hope for future generations.

On July 18, 2000, Jill lost her husband, Wayne, to pancreatic cancer just 28 days after his diagnosis. While her and her three children—Dana, Gina and Tony—were grieving the loss of Wayne, Jill began researching pancreatic cancer. She learned that it was one of the worst forms of cancer and not much research had been focused on it at that time. It was then that she decided she wanted to do something to change that. In 2001, Jill started the Wayne Fusaro Pancreatic Cancer Research Fund in memory of her husband.

She held fundraisers to raise money for the fund with the help of her children and a core group of supporters. “I began researching where to send the fundraising dollars,” she said. “It was most important that the money went to research.” Shortly thereafter, she started sending donations to Johns Hopkins University.

It was Jill’s gastroenterologist, Adam Slivka, MD, PhD, who suggested keeping research efforts in Pittsburgh, where Jill lives. He encouraged her to meet David Whitcomb, MD, PhD, who at the time led active research teams focused on pancreatic diseases at the University of Pittsburgh School of Medicine, where he was a professor of medicine, cell biology and physiology, and human genetics.

Jill has since been able to support Dr. Whitcomb’s pancreatic cancer research through fundraisers she has led—donating more than $420,000 to research since they met some 20 years ago. The dollars raised for the Wayne Fusaro Pancreatic Cancer Research Fund have helped Dr. Whitcomb’s lab purchase laboratory equipment and support research studies.

Dr. Whitcomb’s research and discoveries have changed the understanding of inflammatory disease of the pancreas. His laboratory group discovered the gene variants causing hereditary pancreatitis (Nat Genet 1996; 14(2):141-5), familial pancreatic cancer (PLoS Med. 2006;3(12):e516), the primary genetic risk for alcoholic chronic pancreatitis (Nat Genet 2012;44(12):1349-54), and CFTR-associated syndrome (PLoS Genetics. 2014;10(7):e1004376). And Jill’s fundraising efforts helped contribute to these findings.

Dr. Whitcomb is grateful to Jill for her help over the years. The two have become good friends and have both recently retired, too. Randall Brand, MD, a professor of medicine and a physician -scientist with the University of Pittsburgh School of Medicine, will now oversee pancreatic research. While Jill retired from PNC Financial Services as a vice president, she has no plans to stop her fundraising efforts, and her children will now assist with more active roles. Plus, her family wants to provide a stipend to two medical students or junior researchers at the University of Pittsburgh who are interested in pancreatic cancer research. This will allow them to attend a medical conference or other educational opportunity.

Thanks to the courage of one woman honoring her husband, remarkable findings for pancreatic cancer research have put researchers one step closer to a cure, giving hope to future patients and families.

The last thing on the mind of a 16-year-old is the diagnosis of a complex chronic disease—but instead of a carefree sweet sixteen, Lori Plung, who has lived with Crohn’s disease for more than four decades, was diagnosed with an aggressive form of the inflammatory bowel disease (IBD) at a point in time when few treatment options existed.

Lori, now 58 years old, first became a UPMC patient more than 15 years ago, when her gastrointestinal (GI) provider joined the UPMC health network. After a surgery resulted in the development of short bowel syndrome—which leaves the body unable to absorb nutrients and can cause weight loss, malnutrition and dehydration—she made an appointment with Dr. David Binion, gastroenterologist, co-director and translational research lead for the UPMC IBD Center, and director of UPMC’s Nutrition Services.

“Soon after I became a patient of Dr. Binion, I really got to know him…He’s so passionate about his patients and he won’t stop until his patients are feeling well and have a high quality of life,” said Lori. “I have a very aggressive form of Crohn’s and he knows how to manage that. If he didn’t, I wouldn’t be sitting here with the quality of life I have. And trust me, there’s a lot of upkeep for this quality of life.”

A wife and mother of two, Lori said she was incredibly fortunate to raise her children as a stay-at-home mom while also volunteering with nonprofits, including the Crohn’s & Colitis Foundation and The Friendship Circle. Now that her children are grown, she stays heavily involved in IBD patient support and advocacy—in fact, she founded the Pittsburgh/UPMC chapter of the Crohn’s & Colitis Foundation IBD Patient Support Group in 2020, serves as a patient representative for UPMC’s IBD U.N.I.T.E. educational program, and has lobbied with the Crohn’s & Colitis Foundation for patient rights on both the state and national levels since the 1990s.

“I experienced the disease when there weren’t a lot of medications available and surgery techniques were not what they are now,” said Lori. “Now, I feel like I have a lot to offer other patients.”

In addition to leading the UPMC IBD Patient Support Group twice a month, Lori also meets with patients one-on-one, makes IBD Center patient referrals, connects patients with GI providers, and even hosts social hours on Zoom to foster a sense of community among fellow IBD patients.

Advocacy and, by extension, philanthropy, says Lori, “that’s where my heart is right now…It takes money to provide the care and the research to fulfill patient needs. UPMC has a tremendous amount of talent, and we’re really fortunate in Pittsburgh to have UPMC in our area—to keep us at the top, we need to keep attracting the biggest and the best physicians and researchers alike.”

Lori and her husband Louis made their first gift to UPMC and the University of Pittsburgh in honor of a friend with Crohn’s who had recently passed away. Today, they continue to invest in the Division of Gastroenterology, Hepatology and Nutrition and Dr. Binion’s research as a way to give back and ensure that new and current patients can benefit from the latest and most innovative care available.

“Having this chronic illness and having five major surgeries, soon to be six, hasn’t been easy,” said Lori. “I feel incredibly grateful to UPMC and very fortunate to be able to give back to my fellow patients.”

Bernie Slisz had never planned on an early retirement—he and his wife, Susan, strove to maintain a healthy and active lifestyle while raising their two children in Buffalo, New York. But at just 53 years old, Bernie suddenly became jaundiced, and after being evaluated at a local hospital, doctors confirmed the presence of a mass in his pancreas but could not confirm whether or not the mass was cancerous. Following three months of test and one operation to relieve pressure on the bile ducts, the pancreatic mass resolved itself. Subsequently, a new medical problem ensued—jaundice returned and new symptoms were identified but could not be confirmed.

At this point, Bernie was diagnosed with primary sclerosing cholangitis (PSC), an autoimmune disease that causes progressive destruction of ducts in the liver. Unable to provide the level of specialized care required by this rare condition, his primary care physician referred him to Dr. Adam Slivka, associate chief of clinical affairs for Pitt Medicine’s Division of Gastroenterology, Hepatology and Nutrition and medical director for the UPMC GI Service Line.

Dr. Slivka linked Bernie’s pseudotumor of the pancreas with his bile duct strictures, ultimately diagnosing him with autoimmune pancreatitis with autoimmune cholangiopathy—his immune system had been attacking his pancreas, which causes chronic inflammation and can eventually damage the organ. Bernie was successfully treated with steroids followed by steroid-sparing immunosuppressants and has remained in remission since treatment.

“All doctors are good, but some doctors are noticeably different—the outstanding ones like Dr. Slivka show a passion and relentless pursuit to identify and find solutions to problems at hand,” said Bernie. “I saw from the start that he was special. He makes you feel like you’re his only patient.”

Dr. Slivka kept open communication lines with Bernie’s primary care team in New York—sometimes returning calls in the matter of hours—and worked with Bernie to create and maintain individualized treatment plans that kept up with his changing health status. As a former teacher, Bernie particularly appreciated the academic partnership between Pitt Medicine and UPMC and emphasized how Dr. Slivka included residents during his appointments to identify learning opportunities.

Today, Bernie and Dr. Slivka try to keep in touch, exchanging a few texts every fall when Pittsburgh battles it out with the Buffalo on the football field. The rest of the year, Bernie and Susan split their time between New York and Florida, enjoying time with their children and grandchildren outdoors.

“I can’t say enough about UPMC and Dr. Slivka and what they’ve done for us in terms of making it a happy retirement,” said Bernie. “We’re just so thankful.”

After receiving one of UPMC’s annual fundraising letters, Bernie and Susan made their first gift in support of the UPMC Digestive Disorders Center, then followed it up with gifts to Pitt Medicine in support of GI research. After a few years of individual gifts, they committed to a recurring annual gift to further the work of innovative physician-scientists like Dr. Slivka.

“We try to support the school and hospital to the best of our ability…whenever there’s a possibly to increase what we give, that would be our first priority,” said Bernie. “We just want to be one of the small hands that are giving.”

Beyond investing to improve patient care and clinical research, Bernie has impacted the GI field in a truly unique way—his autoimmune condition helped Dr. Slivka to understand similar symptoms in other patients, allowing him to translate that knowledge into viable intervention options.

“Years ago, I remember Dr. Slivka telling me that very little is known about the liver and that struck me…if people don’t donate, the medical system grows stagnant,” said Bernie. “Donations unleash the creativity and intellect of modern doctors and scientists and ultimately improve the lives of patients like me.”