GIST (Gastrointestinal Stromal Tumor) knows no geographical boundaries. Patients with this rare sarcoma are from many countries around the globe, and all share one common goal: to survive and thrive with this disease. One of the most important survival tools is education about the disease. Knowledge is power, and an informed patient is more likely to advocate for access to the best treatment options.
Dr. David Josephy
On September 17, 2020, the Life Raft Group invited Dr. David Josephy, President of GIST Sarcoma Life Raft Group Canada, to present his highly acclaimed GIST 101: GIST Biology, Genetics and Pathology – an overview of the biology, genetics and pathology of GIST – for the members of Henzo Kenya, a patient advocacy group for GIST and CML patients in Kenya, Africa.
Moderated by Sara Rothschild, VP of Program Services, The Life Raft Group, and by Florence Thwagi, an LRG global liaison and representative of Henzo Kenya, the program began with a welcome from both, and Elo Mapelu, President of Henzo Kenya, and from Norman Scherzer, Executive Director of the LRG, who commented on how exciting it was to have a program organized in the United States, presented by a professor in Canada, to an audience in Africa.
“It is truly an international brotherhood of GIST patients and caregivers,” Scherzer stated.
Gerald Munge
Florence noted that one of their members had passed away this Monday, and tribute was paid to Gerald Munge.
Professor Josephy’s presentation was a concise and understandable overview of GIST. His sense of humor, and excellent ability to utilize both great illustrations and humorous analogies provide even the novice with an understanding of the nature of GIST, its biology, and the standard treatments. Two important takeaways from the presentation that every GIST patient should engrave in stone: Find a GIST specialist and be sure to receive mutational analysis of your tumor early in the diagnostic process. This may be difficult in many areas of the world, dependent on treatment protocols, regulatory restrictions and financial roadblocks. Dr. Josephy made it clear that we are here to help patients in their process of finding the right diagnosis and access to the right treatment.
A question and answer period followed the presentation, where a discussion of the place for adjuvant treatment and the length of treatment was explored.
Over 28 attended. The group was very grateful for the information shared. The Life Raft Group looks forward to extending our reach internationally, so that the “brotherhood of GIST patients” are aware they are not alone.
