The Jed Ian Taxel Foundation for Rare Cancer Research is investing in science and building a community of systemic support for concerted, collaborative innovation that will accelerate breakthroughs in rare cancer research, catalyze innovation among collaborators, and bring promising therapeutics to patients to defeat rare cancer. We partner with leading rare cancer researchers and aligned organizations to empower innovation and accelerate discovery in rare cancer research that translates into lifesaving treatments and better outcomes for rare cancer patients, their families, and the world.
Case Western Reserve University Comprehensive Cancer Center (Case CCC) is one of just 53 National Cancer Institute (NCI)-designated comprehensive cancer centers in the nation. With more than 370 physician-scientist members spanning the university’s renowned School of Medicine, University Hospitals, and Cleveland Clinic, Case CCC strives to develop and translate scientific knowledge from promising laboratory discoveries into new and better treatments for people with rare cancers.
Rare cancers account for more than 25% of all cancers each year, and there is increasing recognition that a national strategy is required in the United States to overcome the obstacles that have traditionally resulted in a lack of funding for rare cancer research and progress for rare cancer patients. In pursuit of such ambitious and urgent goals, the JEDI Rare Cancer Foundation has formed a strategic partnership with the Case CCC’s CURE: The Rare Cancer Initiative, a comprehensive, innovative effort that will transform rare cancer research and save lives around the world.
Director, Case Comprehensive Cancer Center (Case CCC); Vice Dean for Oncology, School of Medicine; Gertrude Donnelly Hess MD Professor in Oncology Research; Chairman, JEDI Rare Cancer Research Foundation Medical Advisory Board.
Formerly Chief of Hematology and Oncology at Columbia University Irving Medical Center (CUIMC) and Deputy Director of the Herbert Irving Comprehensive Cancer Center, his vision is to establish highly innovative, transformative clinical translational research programs in the field of cancer therapy. His post at Case CCC follows 30 years of extensive work in early drug development with bench-top to bedside research in gastrointestinal cancers, melanoma, and sarcoma. As the former Chief of the Melanoma and Sarcoma Service at Memorial Sloan-Kettering Cancer Center (MSKCC), he successfully brought together clinical researchers and basic scientists to establish a highly successful clinical research program that focused on translational clinical trials with small molecule inhibitors and targeted immunologic agents. His efforts at Columbia similarly focused on precision medicine. More recently, Schwartz has developed novel therapies for rare cancers, especially sarcoma and uveal melanoma. This has resulted in a series of innovative translational clinical trials with inhibitors of MDM2, MEK, AKT, IGF-1R, mTOR, Notch, PARP, BRD4 and receptor tyrosine kinase inhibitors. As co-chair of the Experimental Therapeutics and Rare Tumor Committee on the Alliance, he has developed new therapeutics trials for patients with rare cancers, ranging from rare forms of thyroid cancer to sarcoma.
Dean, School of Medicine, Case Western Reserve University; Senior Vice President for Medical Affairs; Director, National Center for Regenerative Medicine; Professor, Department of Medicine and Department of Environmental Health Sciences; Member, Immune Oncology Program, Case Comprehensive Cancer Center
Dr. Gerson’s research interests are in the areas of stem cells and DNA repair. In his stem cell research, he developed mesenchymal stem cells as a therapeutic infusion for blood stem cell transplantation and for the correction of genetic disorders. This therapy is approaching FDA approval. He identified a gene therapy strategy method that creates drug-resistant stem cells capable of selectively repopulating the recipient without the need for high dose toxic therapy. This strategy is now used experimentally and clinically throughout the country. In the area of DNA repair, he developed inhibitors of DNA repair to improve the efficacy of anti-cancer agents. Both are currently in clinical trials. Finally, Dr. Gerson has developed transgenic mouse models that examine the role of critical genes in the stability of stem cell populations over the lifetime of the animal. These studies may predict stem cell diseases of aging and cancer. His research has generated 12 patents in the area of gene therapy and cancer drug development that have been licensed to three companies.
Since 2022, the JEDI Rare Cancer Research Foundation has fielded a JEDIs for Survival national team to raise funds for the annual Cycle for Survival fundraiser that supports rare cancer research at Memorial Sloan Kettering Cancer Center (MSK), which owns and operates Cycle for Survival. Since 2007, Cycle for Survival has raised more than $342 million dollars for their rare cancer research programs.
Our foundation matches the first $10,000 raised by each of our regional cycle teams, and within six months after the close of Cycle for Survival fundraising each year, our donations are directed to the work of Pediatric Oncologist Dr. Micheal Ortiz, MSK Kids, Memorial Sloan Kettering Cancer Center, fueling bold ideas and breakthroughs in rare cancer.
Pediatric Hematologist-Oncologist, MSK Kids Memorial Sloan Kettering Cancer Center
Dr. Ortiz specializes in caring for children and young adults with tumors of the liver and kidney, with particular expertise in treating pediatric kidney cancers such as Wilms’ tumor and rhabdoid tumor, pediatric liver cancers such as hepatoblastoma and fibrolamellar carcinoma, and pediatric sarcomas. In addition to caring for his patients at MSK Kids, Dr. Ortiz conducts research focused on translating basic scientific discoveries from the laboratory into safer and more effective treatments for children and young adults with challenging solid tumors. His lab investigates how these cancers become resistant to standard treatments, screens new drugs in laboratory models of childhood cancers, and identifies markers to predict which patients would benefit from these additional therapies. Ultimately through this research, he hopes to move the most promising treatments from the lab into the clinic to help patients with cancers that have become resistant to standard therapies.
Cancer in children and adolescents is rare. The cancers listed in this summary are so rare that most children’s hospitals are likely to see less than a handful of some types in several years.
The Rare Cancer Research Foundation (RCRF) is a 501(c)3 dedicated to curing rare cancers through strategic investments and innovative collaborations that facilitate effective research and accelerate deployment of promising therapies. Through their globally accessible network of patients, researchers, and partner organizations, RCRF continues to develop an ecosystem of support for all rare cancer research.
RCRF and JEDI Rare Cancer Foundation partner to promote cancer awareness and advocacy. We are collaborators in an initial CURE: The Rare Cancer Initiative workshop in November 2023 and RCRF’s initiative Pattern.org will also be part of CURE as a provider of tumor samples. Pattern.org enables patient donations of excess fresh tissue and fluid by coordinating collection and transfer from any U.S. hospital to world-leading academic institutions. These donations support critical research such as the creation of cell lines and animal models, genome sequencing, and other insights, accelerating understanding of rare cancers and reducing the time to new and effective therapies. Any resulting models, as well as any associated de-identified clinical data, are then placed in the public domain, helping researchers worldwide accelerate their scientific research. To see how research models are generated, click here.
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The Jed Ian Taxel Foundation for Rare Cancer Research | P.O. Box 683501 Park City, Utah 84068
The Jed Ian Taxel Foundation for Rare Cancer Research, Inc. is a 501 (C)(3) Non-Profit Organization, accepting Tax Deductible donations from individuals, corporations, family-advised funds and foundations. Federal Tax ID 86-2610819
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