Rare Pediatric Cancer Initiative to be Announced at Biden Cancer Summit

PHILADELPHIA (September 21, 2018)— On September 21, Vice President Joe Biden and Dr. Jill Biden are hosting the National Biden Cancer Summit in Washington, D.C., to drive the urgency of now by promoting new solutions, bringing together problem solvers, and telling stories that epitomize what it means to be cancer FIERCE. The summit is the flagship event of more than 350 Biden Cancer Community Summits convening throughout the day, all focused on improving the cancer journey for patients, their families, and caregivers.

As part of the summit, the Life Raft Group will announce a new initiative to strengthen and advance research for effective treatments of a rare subset of Gastrointestinal Stromal Tumor (GIST) patients who have been unresponsive to the current standard treatments. To incubate progress for this rare disease population, the group has formed the Pediatric and SDH-Deficient GIST Consortium, a collaboration of experts with complementary skill sets to team with patients to discover targeted solutions.  The aim to identify of the initiative is to identify at least one effective treatment within three years as demonstrated by the initiation of clinical trials for the SDH-Deficient population.

Margaret von Mehren, MD, chief of the Division of Sarcoma Medical Oncology at Fox Chase Cancer Center, is one of the founding members of this initiative. The initial focus will include the creation of a platform for shared data to answer key questions, establishment of a tissue bank and guidelines for clinical care, as well as the generation of cell lines. Expansion and initiation of studies and clinical trials will accelerate results. Access and outreach strategies will include training for community oncologists and educational webinars for patients and families worldwide.

Vice President Joe Biden said, “The goal of the Biden Cancer Summit is to show progress from partners and to engage communities to tell us what issues most plague them, and to bring all resources possible to the fight to identify issues and solutions that matter locally and nationally.”

Partners include Boston Children’s Hospital; Cambridge University Hospitals UK; Children’s Hospital Los Angeles; Dana-Farber Cancer Institute; Fox Chase Cancer Center; Foundation Medicine; GIST Support International; GIST Support UK; Huntsman Cancer Institute;

VCU Massey Cancer Center; Memorial Sloan Kettering Cancer Center; Moores Cancer Center, University of California, San Diego; National Cancer Institute; National Institutes of Health; Oregon Health and Science University; SDH-RA Cancer Research Advocates; St. Jude Children’s Research Hospital; Sylvester Comprehensive Cancer Center; Technion – Israel Institute of Technology; The Life Raft Group; University of Bologna, Italy.

According to Norman J. Scherzer, executive director of the Life Raft Group, “We have more than doubled progress for patients living with GIST with a major exception -pediatric and SDH-Deficient GIST. That is our unfinished business: Nobody wants to lose any more children.”

Fox Chase Cancer Center (Fox Chase), which includes the Institute for Cancer Research and the American Oncologic Hospital and is a part of Temple Health, is one of the leading comprehensive cancer centers in the United States. Founded in 1904 in Philadelphia as one of the nation’s first cancer hospitals, Fox Chase was also among the first institutions to be designated a National Cancer Institute Comprehensive Cancer Center in 1974. Fox Chase is also one of just 10 members of the Alliance of Dedicated Cancer Centers. Fox Chase researchers have won the highest awards in their fields, including two Nobel Prizes. Fox Chase physicians are also routinely recognized in national rankings, and the Center’s nursing program has received the Magnet recognition for excellence six consecutive times. Today, Fox Chase conducts a broad array of nationally competitive basic, translational, and clinical research, with special programs in cancer prevention, detection, survivorship, and community outreach. It is the policy of Fox Chase Cancer Center that there shall be no exclusion from, or participation in, and no one denied the benefits of, the delivery of quality medical care on the basis of race, ethnicity, religion, sexual orientation, gender, gender identity/expression, disability, age, ancestry, color, national origin, physical ability, level of education, or source of payment.

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