This week in our Thriving Together Holiday Campaign, we are highlighting The Life Raft Group’s impactful collaboration with researchers, driving change in GIST research. Our team has produced multiple research studies and posters, engaged with hundreds of patients for care and support input, and partnered with the NIH Pediatric and Wildtype GIST Clinic. We hosted the Pediatric & SDH-Deficient GIST Consortium meeting in DC and participated in major conferences like ASCO, ESMO, and CTOS this year. Notably, we achieved a significant milestone by publishing an article in Nature Medicine, one of the most reputable journals in medicine. Additionally, we funded a research project focusing on key biomarkers to enhance prognostic tools, aiming to detect recurrent disease early for timely consideration of more aggressive treatments.
Participating in and publishing research at medical conferences is crucial for patient advocacy groups. These events offer vital platforms to share medical insights, discoveries, and advancements with the wider healthcare community. Active involvement allows these groups to disseminate findings, raise awareness about health issues, and advocate for patients’ needs. Conferences also facilitate networking with healthcare professionals, fostering collaboration and idea exchange. This engagement boosts the credibility and visibility of patient advocacy groups, contributing to the influence on healthcare policies and practices. Disseminating research not only empowers advocates with the latest information but also enables them to actively shape the direction of medical research and healthcare initiatives, ensuring the patient perspective remains central to scientific discourse and decision-making.
We could not accomplish the things we do without your support. Please consider a donation of any amount to our Holiday Campaign today.
The Life Raft Group actively participated in two significant medical conferences this fall, underscoring our commitment to advancing research, patient care, and advocacy – ESMO and CTOS.
The European Society of Medical Oncology (ESMO) Congress
Sara Rothschild, Sahibjeet Parmar
The LRG participated in the European Society of Medical Oncology (ESMO) Congress held in Madrid, Spain, from October 20-23, 2023. Sara Rothschild and Director of Data Management & Research Sahibjeet Parmar attended this influential oncology platform for the first time. The Life Raft Group proudly shared two accepted abstracts as posters, participating in GIST and sarcoma-focused sessions.
The ESMO Congress, with representation from 155 countries, offered a plethora of sessions, including management of advanced GIST, genetic predisposition in sarcoma patients, clinical trial updates, and discussions on ctDNA. The Life Raft Group received the ESMO Patient Advocate Travel Grant, supporting travel for the conference. Attendance at patient advocacy-focused sessions provided valuable insights on supporting patients and caregivers.
Meetings with industry partners explored ways to strengthen the relationship between LRG and industry for enhanced patient support. Engagements with leading researchers and clinicians worldwide aimed at fostering collaborations and pushing research boundaries.
The ESMO Congress was a fruitful meeting, allowing The Life Raft Group to present two posters, connect with healthcare professionals and industry representatives, and raise awareness of its presence within the patient advocacy and research communities. The organization remains devoted to supporting patients through research and advocacy, contributing to the global efforts to improve outcomes for individuals affected by sarcomas.
The Connective Tissue Oncology Society Conference (CTOS)
Sara Rothschild, Denisse Evans, Jerry Call
The Connective Tissue Oncology Society (CTOS) conference was held in Dublin, Ireland on November 2nd, with Executive Director Sara Rothschild, Senior Director of Data Management & Research Denisse Evans, and Data Analyst Jerry Call in attendance.
The CTOS conference provided a crucial platform to emphasize the collective efforts required for progress in sarcoma research. Notably, The Life Raft Group highlighted its recent publication in Nature Medicine, exploring the intriguing topic of placebos and contributing valuable insights to sarcoma research. Active engagement in CTOS Sunrise Mentorship meetings strengthened the organization’s commitment to collaboration and knowledge-sharing.
Diverse sessions, including those dedicated to improving global sarcoma care, immunology, diagnostic advancements, adolescent and young adult sarcomas, clinical trials, and a comprehensive GIST session, offered a comprehensive overview of current advancements and challenges in sarcoma research. The strategic planning session with the medical advisory board paved the way for innovative projects and plans for 2024.
A pivotal moment occurred during a meeting with Dr. Joanna Pryzbyl, Dr. Xiaolan Feng, and Dr. David Josephy, marking the initiation of an exciting biomarker testing project. The Life Raft Group aims to study key biomarkers to enhance prognostic tools, contributing significantly to the understanding of sarcomas. Interactions with pharmaceutical representatives provided essential insights into ongoing clinical trials and the latest advancements in sarcoma treatment.
LRG Data Analyst Jerry Call presenting at CTOS 2023 in Dublin
Jerry Call presented in the GIST session, highlighting the organization’s contributions and announcing a multi-institutional project to optimize risk classification in GIST. The team’s involvement in Dr. Ashwyn Sharma’s presentation showcased the collaborative spirit within the scientific community.
Closing the CTOS conference on a high note, The Life Raft Group presented two posters, thanking patients and caregivers for their support and participation in the patient registry. Despite the demanding schedule, a dedicated effort was made to meet with a caregiver of one of the youngest SDH patients in Ireland, emphasizing the organization’s commitment to personal connections.
Reflecting on the conference, The Life Raft Group expressed immense satisfaction with the successful outcomes, reinforcing its dedication to supporting sarcoma research and providing global assistance to patients and caregivers.
We are proud to be a part of shaping the future of GIST research and patient care. Our patients’ unique experiences fuel a global community committed to advancing science through the largest GIST patient registry in the world. As GIST is rare, understanding trends accelerates research. Your de-identified and aggregated contributions have powered multiple studies, influencing guidelines and advocating for essential tests. Our patients are pioneers in strengthening the GIST research community.
We could have not achieved all these milestone accomplishments without YOU and your support.