Benjamin Feinstein, by all accounts, was an exceptional young man. By the time he was a high school senior, his grades assured acceptance to numerous top universities. He also excelled all four years on his high school’s varsity basketball and golf teams, and had a huge and loyal circle of friends who would become extended family for his parents, Wayne and Leslee.
“He had a Ricky Nelson ideal kind of life,” Wayne Feinstein recalled. “Never any problems of any kind until he was stricken with gastric cancer at 17.”
Ben’s parents earnestly tried to gather as much information on gastric cancer as they could find. Even with the care and support of noted Stanford University School of Medicine oncologist Dr. James Ford, they realized that this form of cancer — compared to higher-profile cancers, such as breast and leukemia — lacked adequate funding for research into causes and possible cures. This ultimately hampered their efforts to save Ben’s life.
However, Ben’s strong spirit, which endured until the end of his life at age 20, played a big role in how the Feinstein family would cope after Ben’s death. It would also inform a secondary vocation with the Gastric Cancer Foundation (GCF) that tapped into Wayne Feinstein’s past successes in executive positions at Jewish philanthropic organizations, including CEO of The Jewish Federation of Greater Los Angeles in the early 1990s.
“Part of Ben’s strength was an inner calm … which I have rarely witnessed in other human beings,” his father recalls. “He never complained or felt sorry for himself right up until the end. Two weeks before he died, Ben was at home in hospice care, and the two of us were spending the afternoon kibitzing and shmoozing. He said, ‘Dad, I hope you’re going to stay with this. I mean the Gastric Cancer Foundation, because nobody should have to suffer this disease.’ I viewed this as a deathbed commitment. … Ben’s positive legacy, even in the unfortunate way he got sick and passed, is highly motivating.”
The National Cancer Institute (NCI) estimates that 21,600 new cases of stomach cancer will be diagnosed in the United States this year. However, stomach cancer receives less than half of 1 percent (0.4 percent) of federal cancer research dollars, and is ranked 27th in NCI research dollars. Out of 923 total currently outstanding NCI grants, there are only 17 stomach cancer grants. Of all cancers, gastric and esophageal cancers receive the smallest amount of funding and support in terms of federal budgets, large medical foundations and other sources.
Feinstein says that what we don’t know about gastric cancers can genuinely hurt us. The prognosis for patients diagnosed with gastric cancer continues to be dismal, with a five-year overall survival rate below 25 percent in the United States. Although there is a five-year survival rate of 27 percent on average for all cancers, the survival rate for stomach cancer is among the lowest.
Without money to support research into possible causes as well as cures, there are limited ways to be proactive.
This is where the GCF comes in. The organization, founded in 2009, is focused on drawing attention to the causes and symptoms of stomach and esophageal cancers, and the critical need for research into early detection and cures.
“The more awareness and money we raise, the more physicians and top scholars will be able to learn about possible causes and cures for gastric cancers,” Feinstein said. “This will, hopefully, lead to greater public understanding of the illness.”
Wayne Feinstein, Benjamin’s father, is chairman of the board of the Gastric Cancer Foundation.
When his son first became sick, Feinstein took a proactive stance, despite limited time, money and resources. With the support of Stanford’s Ford and J.P. Gallagher (a fellow patient with Ben, who founded the GCF) a comprehensive gastric cancer registry was compiled containing patient data and biological samples, opening doors for more comprehensive research. Simultaneously, Feinstein and his wife contributed to a GCF-funded Stanford Genome Technology Center project that is creating a digital version of the gastric cancer genome based on DNA sequencing.
“When his son passed away, I was tremendously impressed at how he dealt with that,” said Dr. Martin Brotman, chairman of the board of the American Gastroenterological Association (AGA) and national campaign chairman for the AGA Foundation’s endowment campaign. He has also been a personal friend of Feinstein since the 1990s.
“Rather than engage in the usual grieving period, Wayne instead decided to do something about what happened to his son,” Brotman said. “He got involved with the Gastric Cancer Foundation, took it seriously, and has risen to be the chair. While he is tremendously admired by the members of the board, he has also cultivated great public support for the foundation. As a result, it has become a nationally recognized and visible organization.”
Feinstein credits his background with The Jewish Federation for his ability to lead GCF’s board. He says the fact that Ben’s cancer returned seven weeks into his freshman year of college after a successful remission, eventually taking his life, drove him to commit to bolstering the efforts and influence of the GCF. When he took over the board in March 2013, he was determined to lead by example, as he had with Jewish community organizations in Los Angeles, San Francisco and Detroit.
“Several things have enabled me to be an effective board member and an effective lay chairman of the board,” he explained. “I know how to raise money for a cause. This is a skill set I learned and honed for almost 30 years running Jewish community organizations. The second is that when you’ve been a nonprofit executive for 18 years, you learn a lot from both positive experiences and mistakes. Other [useful experience] includes creating a business plan and learning from the successes of other [cancer awareness and fundraising] organizations, in terms of support research, patient care and so on.”
One of his top priorities at the GCF is to address misconceptions about stomach cancer by communicating the importance of greater public awareness.
“Often, symptoms of stomach cancer don’t present themselves until the cancer has metastasized … so early detection is important,” Feinstein explained. “The outlook is poor if the cancer is already in an advanced stage before it is discovered. For too many people, my son included, the tumor is not discovered until it is third- or fourth-stage cancer. … Common-sense advice is that, until we learn more, if you feel like you are having digestive issues or excessive acid reflux and so on, speak with your doctor.”
Although Feinstein and the GCF board still face an uphill battle, great progress has been made in the five years the organization has been in existence. One major step forward was their partnering with the AGA on a $2.25 million endowment earmarked for research. The first AGA/GCF Research Scholar Award in Gastric and Esophageal Cancer has been given to Mohamed El-Zaatari of the University of Michigan, whose research focuses on determining the process by which chronic inflammation causes certain cells to become pre-malignant. The award provides $90,000 per year for three years for his research.
“When I saw what the mission of the Gastric Cancer Foundation was, I sat down with Wayne to see if the American Gastroenterological Association and Gastric Cancer Foundation could partner in funding the Research Scholar Award,” Brotman said. “Since Wayne made it clear that the foundation’s mission was to change a very bad prognosis of gastric cancer through research to finding causes, treatments and new therapeutic approaches, we knew this fit in with the mission of the AGA to fund young researchers.”
Several years on, Feinstein remains mindful about the commitment he made to his son two weeks before he died.
“I am in it for the long haul,” he said. “I frequently conclude our board meetings by telling the others that I hope the next meeting will be our going-out-of-business party. Given the advances in scientific research, the genomics project and high-speed computing, a lot of researchers now say there’s a possibility we may stop this in the next decade. I pray this will be the case. In the meantime, I can’t think of a better way to honor the memories of Ben and J.P. Gallagher and anybody else who suffered from gastric cancer.”
For more information about GCF or to make a donation, visit: www.gastriccancer.org, or visit their Facebook community at https://www.facebook.com/pages/Gastric-Cancer-Foundation/104859701546?ref=hl