Less than six months after Jed Ian Taxel’s diagnosis with a rare metastatic cancer, he learned his treatment was ineffective. Weeks before his death, the 39-year-old nonprofit marketing executive asked his family, “What will be my legacy?”

That question spurred his family to act—and today, Jed’s legacy lives on at Case Western Reserve University’s Case Comprehensive Cancer Center (Case CCC) through a $5 million commitment from his family’s foundation to drive research and innovation into rare cancers like his.

The gift from the Jed Ian Taxel Foundation for Rare Cancer Research (JEDI) will launch CURE: The Rare Cancer Initiative at Case CCC. Case CCC itself is a consortium of 400 physician-scientists from Case Western Reserve, Cleveland Clinic and University Hospitals. The CURE initiative aims to build on Case CCC’s collaborative nature to create a national network among U.S. cancer centers, and to catalyze innovative bench-to-bedside approaches to identifying and treating rare cancers.

Understanding rare cancers

Rare cancers are those that affect fewer than 15 of 100,000 people each year. But there are more than 200 types of rare cancer that comprise one-quarter of all cancers diagnosed in the U.S. While survival rates have shown significant improvement for patients with more common cancers, such as breast, prostate and colon, such progress has not been seen for patients struck by rare cancers.

“Rare cancer has been called the ‘orphan’ of the cancer world because each of these individual cancers are so dispersed in terms of where the patients are located and the small number of people who are actually ill at a given time,” explained Jed’s father, Mark Taxel, chairman and CEO of JEDI. “This leads to a lack of research funding and, inevitably, death sentences for patients like Jed.”

The disparity is so striking that the National Cancer Institute’s latest strategic plan cited rare cancers as a priority.

“At Case Comprehensive Cancer Center, we do an incredible job of advancing research for what are considered ‘common’ cancers, but our network also includes many researchers and clinicians who specialize in ‘rare’ cancers,” said Stan Gerson, MD, dean of Case Western Reserve University School of Medicine and senior vice president for medical affairs at the university, who served as director of Case CCC for nearly two decades. “It’s time to help coordinate research and funding for these cancers in the same way we’ve been addressing the most common cancers.”

Targeted discoveries

As foundation members searched for ways to research rare cancers more effectively, a longtime family friend suggested contacting Gary Schwartz, MD, then chief of hematology and oncology at Columbia University’s Irving Medical Center.

Schwartz’s hypothesis: By building a powerful network of cancer centers across the U.S., researchers could profile rare cancers in thousands of patients, generate a comprehensive map across cancer forms, use molecular technologies to dissect each component of a tumor at single-cell resolution and, ultimately, develop targeted therapeutic approaches that could defeat rare cancers.

The foundation was so encouraged by this vision that when Schwartz became director of Case CCC in the spring, their funding followed him to Cleveland. (Such a move had personal meaning for the family as well: Mark’s brother, Barney Taxel, is a 1972 alumnus, part-time lecturer of photography in the Department of Art History and Art at Case Western Reserve and well-known professional photographer; Barney’s wife, Laura, is a prominent local writer.)

Schwartz’s commitment to rare cancers was nothing new; in fact, Mark Taxel described him as the “spirit of rare cancer at Columbia.” Following decades of research on gastrointestinal cancers—focusing particularly on ways precision medicine could improve outcomes—Schwartz more recently shifted to melanomas and sarcomas, including their rarest forms.

“Discoveries in rare cancers also impact more common cancers,” Schwartz said. “It’s a trickle-up effect.”

As one example, Schwartz’s research into liposarcoma—a rare cancer that starts in fat cells—found that inhibiting the enzyme cyclin-dependent kinase 4 (CDK4) through a drug known as palbociclib could kill the cancerous cells in patients with this disease. Later, researchers from a different institution found that the drug, which is now more commonly known as Pfizer’s Ibrance, also works in patients with advanced or metastatic breast cancer  through a shared mechanism of action

Harnessing power for the future

This new commitment from JEDI will position Case CCC to “make major inroads in rare cancer—to better recognize the problem, educate the public, help patients navigate their own diseases and, hopefully, understand the biology of these cancers so we can develop innovative therapeutic approaches,” said Schwartz, who also is co-chair of the Experimental Therapeutics and Rare Tumor Committee on the national Alliance for Clinical Trials in Oncology.

Mark Taxel has been inspired by Schwartz’s ideas and the collaboration among Case CCC’s institutional partners and broader network.

“With the power of Case Western Reserve’s medical school, Case CCC and other institutions involved, the ability for us to make an impact has grown exponentially. It’s like one plus one equals five,” Mark Taxel said. “And while we started this out to create a legacy for Jed, it’s become so much more than that. The work itself and the opportunity to impact so many lives over time is what drives us.”

The Jed Ian Taxel Rare Cancer Research Foundation will host an exclusive wine event to support rare cancer research at Case Comprehensive Cancer Center Nov. 10 at BurkleHagen photography studio in the heart of Cleveland’s AsiaTown. For sponsorship opportunities or ticket sales, visit case.edu/medicine/giving/strategic-events.

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About the Case Comprehensive Cancer Center

The Case Comprehensive Cancer Center, a National Cancer Institute (NCI)-designated Comprehensive Cancer Center, integrates the cancer research activities of Case Western Reserve University, University Hospitals, and Cleveland Clinic—three of the largest biomedical research and healthcare institutions in Ohio. Since 1987, it has received continuous funding from NCI to make possible the integration of patient care, cancer research, education, and prevention activities nationally and globally, with a specific focus on the four million individuals in the 15 northeast Ohio counties it serves. It is led by Director Gary Schwartz, who also is vice dean for oncology and the Gertrude Donnelly Hess, MD, Professor in Oncology Research at Case Western Reserve University School of Medicine. For more information, visit case.edu/cancer.