ASCO 2019

LRG Directors attended the Annual American Society of Clinical Oncology (ASCO) Conference to network and research collaboration possibilities among over 40,000 doctors, researchers, pharmaceutical companies, and other patient advocacy groups.

The LRG's booth at ASCO 2019

Left to right: Rob Taylor, Anthony Cashin, Laura Occhuizzi, Sara Rothschild, Matt Mattioli

Sara Rothschild, LRG VP, Program Services, Matt Mattioli, Director of Operations, and I attended the ASCO Conference in Chicago from May 31 to June 4. ASCO is one of the largest cancer conferences of the year. The theme of this year’s meeting was “Caring for Every Patient, Learning from Every Patient.” This is what we do at The LRG.

Meeting with advocacy groups whose mission is similar to ours, spending time with our volunteers and watching collaboration in action through our meetings with the Pediatric & SDH-Deficient GIST consortium and the Sarcoma Coalition were the highlights of the event. Our Pediatric & SDH-Deficient GIST Consortium met and shared research updates. This international group of researchers, GIST medical experts, and patient advocacy groups is an excellent example of collaboration in action. In addition, the poster session discussions provided valuable information reflecting the latest data from researchers on lab-based studies and clinical trials.

Volunteers Support The LRG at our Booth

We were supported by Board Member, Jim Hughes, and volunteers Rob Taylor, Eric Biegansky, and Anthony Cashin. The Life Raft Group manned a booth in the Patient Advocacy section, distributing materials and networking with attendees and other patient advocacy organizations.

For me, getting to know our volunteers Rob, Eric was invaluable. Their passion and dedication to helping The Life Raft Group was inspiring. The opportunity to discuss the needs of patients helps direct our future projects. To highlight the difference patients can make in research efforts, Dr. Joshua D. Schiffman from Huntsman Cancer Institute and member of our Pediatric & SDH-Deficient GIST Consortium, dropped by the booth to present Eric with an award for his donation of tissue for research. Patients can truly play an important role in research in many ways.

Making Plans for Future GDOLs

Being able to put faces to names enlivens the work we do. It was a great opportunity to touch base with so many GIST experts. Meetings with GIST specialists allowed us to discuss future collaborative efforts. We are planning our 2020 GIST Days of Learning (GDOL). Meeting with both Dr. Breelyn Wilky (University of Colorado) and Dr. Michael Wagner (University of Washington, Fred Hutchinson Cancer Research Center) at ASCO helped us to solidify our plans.

Discussing International Collaborations

On the global front, we met with Dr. Matías Chacón of Argentina and Luciana Holtz from Oncoguía, our Brazilian representative, to discuss our collaborative effort to expand our patient registry with Latin American data. We are looking forward to continued conversations as we strive to increase survival in Latin America.

On the Research and Testing Front

The overwhelming theme running throughout presentations and meetings was the importance of testing, especially Next Generation Sequencing. As cancers become more complex as we discover new subsets, this becomes an important advocacy issue. We will continue to share this message with our community as testing is a top priority for The Life Raft Group.

We also attended meetings with pharmaceutical companies, Novartis, Blueprint Medicines and Deciphera, both to learn more about their research efforts, and to discuss how we can work together to support our patients. In addition, we are expanding our relationship with the Biden Cancer Initiative relating to their clinical trial initiative and how our sophisticated GIST Clinical Trials database can be utilized.

You are surrounded by a wealth of knowledge at ASCO. We took advantage of every opportunity presented to see what we could learn from others. In the evenings, we attended events such as the President’s Reception, both Novartis Global and U.S. meetings and Sylvester Comprehensive Cancer Center’s Miami Nights.

The Life Raft Group continues to work to build relationships that support our mission to help our patients survive and thrive. ASCO continues to be an important part of that mission.

Abstracts and posters from the ASCO 2019 Meeting that present findings on GIST can be found here: