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.”