WAYNE, N.J. and WASHINGTON, D.C. (September 21, 2018) – The Life Raft Group announces at the Biden Cancer Summit 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, we have formed the Pediatric & SDH-Deficient GIST Consortium, a collaboration of experts with complementary skill sets to team with patients to discover targeted solutions. We aim to identify at least one effective treatment within three years as demonstrated by the initiation of clinical trials for the Pediatric and SDH-Deficient population. 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 stakeholders, and 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.

The Biden Cancer Initiative called on public and private sector organizations to develop new innovative programs and partnerships that will double the rate of progress against cancer and improve the cancer patient experience.

Vice President Joe Biden said: “We are at an inflection point in the understanding and treatment of cancer and are starting to break down barriers and change the culture in ways that are needed to deliver what patients deserve – a cancer research and care system that puts saving lives above all else. The commitments we have received, including The Pediatric & SDH-Deficient GIST Consortium presented by The Life Raft Group, bring us closer to developing the right systems, the right culture to get us there.”

Announced at the Biden Cancer Summit, these commitments spotlight collaboration and show demonstrable impact. Chosen as one of only ten innovative commitments to be presented on stage at the Summit, LRG Executive Director, Norman J. Scherzer, will describe the compelling reason for creating the consortium: That no more children are lost to this disease with no viable treatments.

According to Scherzer: “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.”

Founders of The Pediatric & SDH-Deficient GIST Consortium Include Clinical/Research Partners:

  • Christopher B. Weldon, MD, PhD, Boston Children’s Hospital
  • Venkata Ramesh Bulusu, MD, Cambridge University Hospitals, UK
  • Ruth Casey, PhD, Cambridge University Hospitals, UK
  • Olivier Giger, MD, Cambridge University Hospital, UK
  • Lee Helman, MD, Children’s Hospital Los Angeles
  • Suzanne George, MD, Dana-Farber Cancer Institute
  • Katherine Janeway, MD, Dana-Farber Cancer Institute
  • Jonathan Keith Killian, MD, PhD, Foundation Medicine
  • Margaret von Mehren, MD, Fox Chase Cancer Center
  • Joshua Schiffman, MD, Huntsman Cancer Institute
  • Michael P. LaQuaglia, MD, Memorial Sloan Kettering Cancer Center
  • Jason Sicklick, MD, Moores Cancer Center, University of California, San Diego
  • Fernanda Arnaldez, MD, National Cancer Institute
  • Markku Martti Miettinen, MD, National Cancer Institute
  • Karel Pacak, D.Sc., MD, PhD, National Institutes of Health
  • Constantine Stratakis, MD, National Institutes of Health
  • Michael Heinrich, MD, Oregon Health and Science University
  • Alberto S. Pappo, MD, St. Jude Children’s Research Hospital
  • Jonathan Trent, MD, Sylvester Comprehensive Cancer Center
  • Eyal Gottlieb, MSc, PhD, Technion-Israel Institute of Technology
  • Maria Pantaleo, MD, University of Bologna, Italy
  • Sosipatros Boikos, MD, VCU Massey Cancer Center

Patient Advocacy Partners Include:

  • Phyllis Gay, GIST Support International
  • Dr. Victoria Bassett, GIST Support UK
  • Jayne Bressington, GIST Support UK
  • Becky Owens, SDH-RA Cancer Research Advocates
  • Norman Scherzer, The Life Raft Group
  • Sara Rothschild, MPH, The Life Raft Group
  • Yu Wang, MB, PhD, The Life Raft Group

About the Biden Cancer Summit:

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 in D.C. 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.

About the Biden Cancer Initiative

The Biden Cancer Initiative is an independent nonprofit organization committed to developing and driving the implementation of solutions to accelerate progress in cancer prevention, detection, diagnosis, research, and care, and to reduce disparities in cancer outcomes.

About the Life Raft Group

The Life Raft Group is a nonprofit with a simple focus: Enhancing survival and quality of life for people living with GIST (Gastrointestinal Stromal Tumor) through patient-powered research, education and empowerment and global advocacy efforts. To learn more, visit www.liferaftgroup.org

For more information or media inquiries, please contact: Mary Garland, Director of Communications

Email: mgarland@liferaftgroup.org

Phone: 973-837-9092, ext. 108