Together, We Can End Rare Cancer.
A Message of Hope from Mark Taxel
Chair and Founder, Jedi Rare Cancer Foundation
Interim CEO/Board Member, Alliance for Rare Cancers
Our foundation’s journey began...
Just 4 short years ago, driven by passionate, talented people and organizations representing medical institutions, academia, philanthropy, and government, we launched the Jedi Rare Cancer Foundation. Today, we are actively leading a movement dedicated to uniting the entire rare cancer community at unprecedented scale to accelerate research, treatment, and cures for all rare cancers, the hidden unmet need in our modern era.
Why is this mission important?
While every rare cancer is individually rare, rare cancers represent 1 in 4 cancers diagnosed annually in the U.S., including every type of pediatric cancer.
Despite these numbers, rare cancer has been left behind in the fight against cancer. There is a mismatch between the level of investment and the scale of the challenge.
Cancer science and treatment has advanced dramatically in the past 25 years, as government, industry, and academia focused (with great results) on major common cancers such as breast, lung, colon, and prostate. However, there is no such standard of care or suggested set of treatment options for rare cancer.
The 5-year survival rate for most common cancers has gone from 50% to more than 70% but rare cancer patients have seen little to no progress in survival rates because there is little to no investment for rare cancer research, treatment, and cures–for reasons documented in The U.S. Rare Cancer Landscape: A 2023 Report, the study our foundation commissioned last year.
What would it mean to end rare cancer?
Rare cancer patients would have the same opportunity for treatment or cure as common cancer patients.
The Jedi Rare Cancer Foundation, with the support of our donor community and in partnership with Case Comprehensive Cancer Center, the Rare Cancer Research Foundation, and other leaders in academia, philanthropy, patient advocacy and government, has formed the Alliance for Rare Cancers (ARC).
The process we are engaged in with ARC has resulted in a strategic plan and implementation model that represents a comprehensive approach to accelerate rare cancer progress from bed to bench and back again. This model will be designed with the goal of attracting funding from major government and private sources.
Our foundation is also the early-stage primary funder and organizer for a transformative research program CURE: The Rare Cancer Initiative at Cleveland University’s Case Comprehensive Cancer Center (Case CCC), led by Dr. Gary Schwartz. We have committed to raise $5 million dollars over five years; Case CCC estimates program costs to exceed $12 million dollars, of which the University has committed to raise the balance of funds. This rare cancer initiative will be a collaboration with scientists from other leading institutions.
Now is the time to make rare cancer progress.
In the past five years, new science is poised to deliver lifesaving precision medicine and even cures to some cancer patients, making it possible to invest in rare cancer. It is our strong belief that transformative breakthroughs—not just in science but in the ability to deliver better treatments to rare cancer patients–are now possible. Advancements in genome sequencing combined with molecular analysis powered by AI are providing precision medicine with the potential to impact rare cancer patients heretofore condemned.
Of course, this will take time and money. That’s why our foundation and ARC partners are engaged in planning and building the framework that will end rare cancer.
New discovery is one of the outputs of this process. While pharma and industry are not inclined to fund early stages of development, we anticipate they will join the fold as measurable progress becomes evident. We are putting the infrastructure in place that can make that happen. This is something we can and must do.
With gratitude and respect,
Mark Taxel, Chair and Founder
Jedi Rare Cancer Foundation
Your generous donation is an investment in ending rare cancer as we know it.
Jed Ian Taxelʼs untimely death at age 39 exemplifies the heartbreak and loss associated with rare cancer. He lived six short months after his initial diagnosis. A few weeks before he died, after learning his latest treatment was ineffective, Jed asked me, “What will be my legacy?”
The Jedi Rare Cancer Foundation is Jed’s legacy. A legacy that contributes to the betterment of mankind. A legacy he would want … one not defined by cancer but defined by better outcomes. While I can’t give you a definitive timeline today, we won’t have a chance if we don’t act now. He and we are not alone because rare cancer is not rare.
