In less than six months, Jed Ian Taxel’s family went from learning of the 39-year-old nonprofit marketing executive’s rare-cancer diagnosis to determining how they might maintain his legacy, after the New York native died on his third wedding anniversary.
The answer, in part: launching the Jed Ian Taxel Foundation for Rare Cancer Research (JEDI).
The next step: establishing CURE: The Rare Cancer Initiative at Case Comprehensive Cancer Center. 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.
Case CCC director Gary Schwartz, MD, believes this networked approach is necessary to strengthen the collection of data on rare cancers. Defined as those that affect fewer than 15 of every 100,000 people each year, the 200-plus different types of rare cancers comprise one-quarter of all cancers diagnosed in the U.S.
“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.”
While survival rates for patients with more common cancers (such as those affecting the breast, prostate and colon) have improved significantly, such advances have not occurred for patients struck by rare cancers.
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, also the vice dean of oncology at the university's School of Medicine.
“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.”
Originally published in the winter 2024 issue of Forward Thinking magazine