One Family’s Legacy to Pancreatic Cancer Research

After losing her 51-year-old husband to pancreatic cancer, Jill Fusaro faced many uncertainties and unanswered questions, but one thing was very clear. She wanted to raise money for pancreatic cancer research.

“Every time we went to the hospital and the doctors saw ‘pancreatic cancer’ on his chart, they always had a blank look on their face because there was nothing they could do and nothing they could say to me,” Jill said. “I knew right then that we needed more research into pancreatic cancer.”

Jill considered getting involved with national pancreatic cancer organizations, but she decided against it because she wanted to make sure that any money she raised went specifically — and only — toward pancreatic cancer research. So, she created the Wayne Fusaro Pancreatic Cancer Research Fund in honor of her late husband.

Jill, who lives in Pittsburgh, Pennsylvania in the United States, donated the first round of money she raised to Johns Hopkins University more than 200 miles away from her hometown.

Soon after, a chance encounter with a nurse at her local hospital, which is now part of the University of Pittsburgh Medical Center, convinced her to consider donating closer to home. Jill, who had recently turned 50, went for her first colonoscopy and was chatting with the nurse about how she had created the Wayne Fusaro Pancreatic Cancer Research Fund and just made her first donation to Johns Hopkins.

“The doctor walked in right when I was saying that I had donated money to support pancreatic cancer research at Johns Hopkins in Baltimore, and he said, ‘What about Pittsburgh? Why aren’t you donating it here? I need to connect you with Dr. David Whitcomb,’” Jill recalls.

Within a couple of days, Jill connected with David Whitcomb, MD, PhD, who specializes in pancreaticobiliary disease research and leads active research teams focusing on pancreatic cancer at the University of Pittsburgh Medical Center (UPMC).

Supporting Pancreatic Cancer Research

Dr. Whitcomb is the Giant Eagle Foundation Professor of Cancer Genetics and the Director of the Precision Medicine Service at UPMC. He is editor-in-chief of Clinical and Translational Gastroenterology, and he also provides an information service on pancreas-related issues to patients, physicians, and scientists through his involvement with Pancreas.org

“The first check I gave was only for $12,000, but he has always treated me like I donated millions of dollars,” Jill said of Dr. Whitcomb. “It has been a special connection that means a lot to me.”

Dr. Whitcomb’s research has led to major advances in personalized medicine. His laboratory group discovered the gene variants causing hereditary pancreatitis, familial pancreatic cancer, the primary genetic risk for alcoholic chronic pancreatitis, and more. Throughout his career, he has published over 200 peer-reviewed manuscripts and edited 10 books on pancreatic disease.

Dr. Whitcomb says he is very grateful for the longstanding support of the Wayne Fusaro Pancreatic Cancer Research Fund. The donations have been a force multiplier for the laboratory where he and Professor Randall Brand, MD, collaborate on pancreatic cancer research.

“Medical research is both expensive and time-consuming,” Whitcomb explained. “The Wayne Fusaro Pancreatic Cancer Research Fund has provided significant support for pancreatic cancer research at the University of Pittsburgh and UPMC for many years. Unlike some other grants that are restricted to specific projects, the Wayne Fusaro Pancreatic Cancer Research Funds can be used to address immediate and opportunistic needs such as generating preliminary data for major grant applications, for completing critical experiments to finish a research project, buying supplies or replace equipment that is required for ongoing research and others.”

Over the years, the Wayne Fusaro Pancreatic Cancer Research Fund has raised more than $550,000 to help support Dr. Whitcomb and Dr. Brand’s pancreatic cancer research.

Dr. Whitcomb still attends the foundation’s annual golf outing, which has been going on for 22 years. The event always features an update from Dr. Whitcomb or another physician about the latest developments in pancreatic cancer research.

Carrying on a Family Legacy

The golf outing and other fundraisers are always family affairs. Jill’s son, Tony, enjoys helping with the golf tournament, and her daughters, Dana and Gina, always help with the annual Designer Purse Bash. Jill says her daughters are trying to convince her to try a Drag Queen Bingo fundraiser in the future.

“If they want to continue this foundation, the kids have to be involved and be ready to take this over,” Jill said. “We have a lot of golfers who travel from far away to participate in the golf outing every year and they are getting older, so we need to make sure we have some young people involved, too.”

Jill also recently found another way to engage the younger generations. The foundation created two small awards that will be given to two medical students or junior researchers at the University of Pittsburgh who are interested in pancreatic cancer research. The awards will provide a stipend for them to attend a medical conference or participate in a similar educational opportunity.

More than 20 years after losing Wayne, Jill is still passionate about the need for more research.

Pancreatic cancer research remains imperative because the disease continues to affect more families around the world each year. The incidence of pancreatic cancer has gone up by about 1% each year since 2000, and an estimated 495,773 people globally received a pancreatic cancer diagnosis in 2020.

Pancreatic cancer is the fourth leading cause of cancer death in both men and women in the United States.

Pancreatic cancer is a type of cancer that starts in the pancreas, which is an organ that is located behind the stomach. The pancreas is about 6 inches (15 centimeters) long and less than 2 inches (5 centimeters) wide in adults.

Pancreatic Cancer Diagnosis and Prognosis

Pancreatic cancer is often hard to diagnose because there is no screening test to detect pancreatic cancer before patients have symptoms. As a result, pancreatic cancer is often not found until later stages when the cancer has already spread to other areas of the body.

This was the case with Jill’s husband, Wayne. He had been experiencing some minor gastrointestinal issues that his doctor thought could have been caused by his gallbladder. However, an ultrasound revealed fluid in his abdomen, which led to more scans and ultimately a pancreatic cancer diagnosis in the summer of 2000, Jill explained.

The devastating diagnosis brought their family’s life to a halt.

“This was June when he was diagnosed with pancreatic cancer, and I remember when someone in our family commented on Christmas, the doctor said, ‘Well, that could be a good goal,’ which really shocked me,” Jill recalls. “They knew he wasn’t going to live long.”

Jill remembers the shock, pain, and uncertainty of that difficult time in their lives.

“He was diagnosed on a Tuesday, and that following Saturday they were having a surprise 50th birthday party for me,” Jill said. “I really wanted to cancel it, but they wouldn’t let me.”

The night of Jill’s birthday party he was hospitalized for a blood clot that he developed after a chemotherapy treatment. He was only able to receive two chemotherapy treatments.

Wayne died just 28 days after his diagnosis, leaving behind Jill and their three children, the youngest of whom was in college.

Pancreatic Cancer Clinical Trials

There was no discussion of searching for a clinical trial at the time for her husband, but Jill says she has seen pancreatic cancer patients pursue that option in recent years. She is glad that there is ongoing research into pancreatic cancer diagnostics and treatments.

myTomorrows offers a free service to help patients and physicians find and access clinical trials and expanded access programs. Patient Navigators, who speak 10 languages and are trained to explain medical concepts in a way that patients understand, guide patients through the process of finding possible clinical trials.

As a company founded and run by physicians, myTomorrows also has an experienced medical team that has supported more than 500 physicians around the world in their search for clinical trials and expanded access programs.

Clinical trials are research studies that evaluate drugs in development. When a new treatment is being developed, it must be tested to evaluate the safety and effectiveness of the treatment on patients’ health. Clinical trials are a key part of developing new drugs.

A Personal and Family Commitment to Pancreatic Cancer Research

Jill’s efforts to support pancreatic cancer research and eventually bring more treatments to patients are an extraordinary example of strength and generosity.

“I have been at the University of Pittsburgh and UPMC for 30+ years and have met many people in many different circumstances,” said Dr. Whitcomb. “Jill is among the people that I respect the most because she turned the tragedy of losing her husband to pancreatic cancer into a personal and family commitment to do all that they could to prevent others from suffering and dying as their beloved Wayne did.”

Having recently retired from her job as a team manager in underwriting at a large bank, Jill is eager to put more time and energy into the fund. Jill says she wishes she could have done more over the years, but she is proud that the fund has lasted for 22 years.

“They organized their family and friends through multiple fund-raising events that continue year after year with growing strength, reputation, and effectiveness. They have also reached out to numerous other families who are going through similar trials to provide emotional support and specific opportunities to join them,” Dr. Whitcomb said. “Jill has become a role model to many people, as well as an effective supporter of the war on pancreatic cancer.”

“She truly is one in a million,” said Dr. Brand.

myTomorrows offers a free service to help patients find pancreatic cancer clinical trials.