The Life Raft Group kicked off its 2016 GIST Day of Learning (GDOL) series this spring with events from coast to coast. GDOLs are free, one-day programs that provide both education and support for the GIST community. Top GIST specialists present the latest on research and treatment options and provide a comprehensive review of the science behind GIST. GDOLs provide an opportunity not only to meet and interact with local expert practitioners in an intimate setting, but also for patients to connect with one another in a supportive environment.
The first GDOL was held in Portland, Oregon on Wednesday, March 30 at the Oregon Health & Science University (OHSU) Center for Health & Healing. The event was initiated by Mark Heinrich, son of Dr. Michael Heinrich, as a school service project for his senior year. Mark, who introduced the event, said that he has been inspired by the work that his father does for the GIST community as both a doctor and a scientist.
Topics included treatment updates for GIST, understanding the importance of GIST pathology and mutational testing, and information and resources for participating in clinical trials.
The featured speakers were medical oncologist Michael Heinrich, pathology expert Christopher Corless and registered nurse Tracy Walker, all from OHSU. LRG Patient Registry Director Michelle Durborow provided an overview of LRG programs, focusing on the LRG Patient Registry and Tissue Bank. She outlined the impact of data from tissue donation and its benefits for LRG members.
A special thank you goes out to the Heinrich family and friends for their assistance in holding this event.
Dr. Breelyn Wilky
Miami’s fifth annual GDOL was held on Sunday, April 3, with 40 GISTers and their loved ones in attendance. This conference would not be possible without the support and cooperation of our friend and colleague, Dr. Jonathan Trent, Co-Director Musculoskeletal Center, Director of Sarcoma Medical Research Program, and Professor at the University of Miami. His knowledge, commitment, and passion for helping the GIST community have fostered a true collaboration between the LRG and the Sylvester Comprehensive Cancer Center. We are thankful to Sylvester for partnering with us and enabling us to provide these excellent conferences.
Dr. Breelyn Wilky kicked off the event with an “Overview of GIST and its Medical Management.” She provided the group with a strong foundation of basic knowledge about GIST, as well as discussing the clinical trials taking place at Sylvester and side effects management.
Dr. Alan Livingstone followed with “Surgical Management of GIST.” He reviewed some complicated cases successfully operated on at Sylvester, impressing the group with the skillfulness of the surgeons.
One GISTer shared a testimonial: He had been suffering from a large tumor that impacted his quality of life. Other institutions told him that they would be unable remove it with surgery. However, he then moved to Florida, where Dr. Livingstone operated on him (at the persistence of Dr. Trent). His outlook and quality of life improved dramatically.
Another GISTer, who is a national CrossFit competitor, inspired the group with his perseverance, positivity and determination that he wasn’t going to let cancer beat him down.
Sara Rothschild with the staff of Sylvester Cancer Center.
Pathologist Andrew Rosenberg gave a captivating presentation, “Understanding Pathology and the Role of Mutational Testing,” on how GIST is diagnosed and the important role of molecular testing. A Q&A panel followed, which allowed participants to ask a range of questions to the doctors in attendance.
Lisa Marie Merheb, MSW, LCMW, shared important resources and support options for navigating care during her talk on the “Psychosocial Implications of GIST.”
Dr. Trent finished the day by presenting “How Can We Accelerate a Cure?,” in which he focused on some new, innovative approaches being tried at Sylvester, including immunotherapy and a vaccination trial. He also touched upon generics, a topic of of interest to many GIST patients.
We would like to thank our volunteer photographer, Don Edgar of DL Photography, for capturing the GDOL, as well as our volunteer videographer, Van Russell, for recording the meeting on video. To view photos and videos, please visit: www.liferaftgroup.org/2016/04/gdol-miami-2016-photos/.
On Monday, May 9, The Life Raft Group held the next stop of the GDOL series in Evanston, Illinois, on Chicago’s North Shore. NorthShore University Health System/Evanston Hospital campus hosted the evening event, which was dedicated to Chris Carley, an LRG board member and longtime Chicago resident who passed away the weekend before. Jim Hughes, LRG board member and Chicago state leader, spoke about Chris and his accomplishments, vision and support of the LRG.
Among the presenters were Karl Bilimoria, MD, Director of Surgical Oncology at the Robert H. Lurie Comprehensive Cancer Center at Northwestern University; Bruce Brockstein, MD, Medical Director at NorthShore University Health System/Kellogg Cancer Center; and a panel of pharmacists from NorthShore, including Ashton Koskosky, Kathryn Schiavo and George Carro, Sr. Director of Oncology Pharmacy Services.
The sessions were very informative. Dr. Bilimoria provided an update on surgical treatment. Dr. Brockstein discussed GIST medical management. Our panel of pharmacists discussed generic vs. brand and other pharmaceutical updates. A Q&A session followed.
Our theme for Life Fest and GIST Awareness Day this year is “The Gift of Time.” Our logo is an hourglass, with each grain of sand representing one of our own cherished moments in time. Many of our participants spoke about their “Gift of Time” and placed their memories on our hourglass banner.
We would like to thank our volunteer students, Alyssa Occhiuzzi and Michelle Soderlind, for taking photos and videos.
We would like to acknowledge our sponsors who make GDOLs possible: Novartis, Bayer, Pfizer, and Genentech.
New York City will be our next GDOL stop, on June 29, 2016. Please stay tuned to the LRG website and emails for more information on these and other events.
Interested in having the LRG come to your city for our next GDOL? Email your ideas to Laura Occhiuzzi at firstname.lastname@example.org.