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DTSTART;TZID=America/New_York:20261109T120000
DTEND;TZID=America/New_York:20261109T120000
DTSTAMP:20260924T173830Z
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SUMMARY:Understanding Metabolic Changes in SDH-Deficient GIST
DESCRIPTION:REGISTERJoin The Life Raft Group on November 9 at 12:00 PM for “Understanding Metabolic Changes in SDH-Deficient GIST” with Dr. Matthew Hemming of UMass Chan Medical School. This interactive\, patient-focused webinar will explore what makes SDH-deficient GIST different and how changes in the way tumor cells produce and use energy may help them grow and survive. Dr. Hemming will share exciting new research on these tumors and possible new treatment approaches. Patients will have the opportunity to ask questions and engage directly with Dr. Hemming throughout the discussion. \nThese webinars are for informational purposes only and should not replace professional medical advice. Always consult your healthcare provider before making any treatment or lifestyle changes. \nAbout Our Presenter:\n \nDr. Matthew Hemming\nUMass Chan Medical School\n \nMatthew Hemming\, MD\, PhD\, is an assistant professor of medicine at UMass Chan Medical School\, practicing sarcoma medical oncologist\, and principal investigator of the SarcomaLab. He received his BS from UC San Diego\, PhD from Harvard University\, and MD from Harvard Medical School. He completed internal medicine residency at Massachusetts General Hospital and Hematology/Oncology fellowship at Dana-Farber Cancer Institute. He has focused his clinical practice and laboratory work on sarcoma and GIST\, with the goal to improve diagnostic and treatment strategies through basic and translational research. \nThank You to Our Sponsors:
URL:https://liferaftgroup.org/event/understanding-metabolic-changes-in-sdh-deficient-gist/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
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DTSTART;TZID=America/New_York:20261110T120000
DTEND;TZID=America/New_York:20261110T120000
DTSTAMP:20261015T172934Z
CREATED:20261015T172934Z
LAST-MODIFIED:20261015T172934Z
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SUMMARY:AI as a Tool for Patients & Caregivers
DESCRIPTION:REGISTERThe Liposarcoma Support Network\, a program of The Life Raft Group\, is hosting this informative webinar on using AI effectively. Presenters Jillian Scalvini and Lindsay Marsh will be discuss how patients and caregivers can use Artificial intelligence (AI) tools like ChatGPT to better navigate their healthcare journeys\, particularly when managing a complex diagnosis.  AI has become increasingly accessible but knowing how to use it safely and effectively can be challenging.The session will cover practical ways AI can help make medical information easier to understand\, help prepare for appointments\, navigate insurance and billing\, and support conversations with healthcare teams. They will also discuss important considerations around privacy\, accuracy\, and the importance of using AI to complement\, not replace\, guidance from qualified healthcare professionals. \nWhether you’re new to AI or already experimenting with these tools\, this session will provide practical tips and examples you can put to use right away. There will be time for questions and discussion at the end. \nThese webinars are for informational purposes only and should not replace professional medical advice. Always consult your healthcare provider before making any treatment or lifestyle changes. \nAbout Our Presenters:\n \nLindsay Marsh is a Senior Managing Consultant with IBM Consulting\, specializing in Medicaid policy\, healthcare analytics\, and program integrity. With extensive experience helping state healthcare programs navigate complex data\, policies\, and systems\, she brings a unique perspective on making healthcare information more accessible and actionable. Lindsay is also a liposarcoma caregiver and passionate advocate for patients and families navigating cancer. Drawing on both her professional expertise and personal experience supporting her husband\, Darnell\, she is committed to helping patients and caregivers become more informed\, confident advocates throughout their healthcare journeys. She holds a Master of Public Affairs (MPA). \n \nJillian Scalvini is an Associate Partner with IBM Consulting\, specializing in Medicaid program integrity\, healthcare analytics\, and using technology to help organizations navigate complex healthcare systems. She holds a Master of Public Affairs (MPA) and is an Accredited Healthcare Fraud Investigator (AHFI). Beyond her professional experience\, Jillian brings a deeply personal understanding of the challenges families face when navigating complex healthcare situations. She and her family have also been an important part of supporting Lindsay and Darnell throughout Darnell’s liposarcoma journey. Combining her professional expertise with her personal experiences\, Jillian is passionate about helping patients and caregivers access information\, ask informed questions\, and navigate healthcare with greater confidence. \nThank You to Our Sponsors:
URL:https://liferaftgroup.org/event/ai-as-a-tool-for-patients-caregivers/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261118T120000
DTEND;TZID=America/New_York:20261118T120000
DTSTAMP:20261029T154349Z
CREATED:20260804T182302Z
LAST-MODIFIED:20261029T154349Z
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SUMMARY:Introducing the New LRG Patient Registry
DESCRIPTION:REGISTERJoin The Life Raft Group for “Introducing the New LRG Patient Registry” on November 18th at 12:00 PM. Denisse Evans\, Senior Director of Data Management & Research\, and Ian Hill\, Data & Registry Systems Analyst\, will walk through the Registry’s new features and share how these enhancements are designed to better serve both patients and researchers in the GIST community. \nAttendees will learn how the redesigned LRG Patient Registry strengthens data collection\, improves the patient experience\, and supports research efforts aimed at advancing understanding of disease progression\, treatment outcomes\, and long-term survivorship. Whether you’re a patient\, caregiver\, researcher\, or advocate\, this webinar will offer valuable insight into how the Registry is evolving to drive meaningful progress in GIST research and care. \nThese webinars are for informational purposes only and should not replace professional medical advice. Always consult your healthcare provider before making any treatment or lifestyle changes. \nAbout Our Presenters:\n \nDenisse Evans\nSenior Director of Data Management & Research \n \nAs Senior Director of Data Management & Research at the Life Raft Group (LRG)\, Denisse Evans brings a dynamic blend of scientific expertise\, strategic leadership\, and a passion for patient advocacy to the forefront of Gastrointestinal Stromal Tumor (GIST) research. Her career has been dedicated to leveraging data-driven insights to improve patient outcomes\, empower communities\, and drive innovation in rare cancer research. \nShe specializes in designing and implementing robust study protocols\, with a focus on Patient-Reported Outcomes (PRO) and biomedical data analysis. As Principal Investigator of the Natural History Study for the largest GIST cohort globally\, she leads groundbreaking research efforts to uncover insights into disease progression\, treatment outcomes\, and long-term survivorship. She spearheaded the development of the newly rebuilt LRG Patient Registry\, guiding its redesign to better serve both patient and scientific communities and strengthening its role as a foundational resource for GIST research. In addition to managing the Registry\, she heads the organization’s Tissue Bank\, a vital resource for advancing translational research. Her leadership extends to fostering collaborations with premier medical and academic institutions\, enabling multi-institutional studies that drive impactful discoveries in the field. \n \nIan Hill\nData and Registry Systems Analyst\n \nIan Hill\, Data and Registry Systems Analyst at The Life Raft Group\, brings a career path that reflects the blending of technical skill\, analytical thinking\, and a strong desire to make a difference in people’s lives. With a Bachelor of Science in Biology from Ramapo College of New Jersey and a Master of Data Science from the same institution he built a strong foundation in understanding complex systems that naturally evolved into his pursuit of data science. In his role\, he brings together his technical training\, scientific background\, and personal values to support registry development\, clean and analyze clinical datasets\, and design reports and dashboards that make data meaningful for researchers\, clinicians\, and patients alike. He played a major part in bringing the technical aspects of the newly rebuilt LRG Patient Registry to life\, helping translate its vision into a functioning system built to serve patients and researchers alike. His ability to translate raw information into actionable insights highlights both his technical expertise and his empathy for those who rely on the data to guide treatment and care. \nThank You to Our Sponsors:
URL:https://liferaftgroup.org/event/introducing-the-new-lrg-patient-registry/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261202T120000
DTEND;TZID=America/New_York:20261202T120000
DTSTAMP:20261019T174952Z
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SUMMARY:Updates from CTOS 2026
DESCRIPTION:REGISTERThe CTOS Annual Meeting is the yearly conference of the Connective Tissue Oncology Society\, where global sarcoma experts share new research and clinical insights. The Life Raft Group is partnering with Dr. Pawel Sobczuk of Vall d’Hebron Institute of Oncology to present “GIST Updates from CTOS 2026” on December 2nd at 12 PM ET. During this virtual session\, Dr. Sobczuk will highlight key GIST-relevant findings presented at CTOS\, followed by a Q&A with attendees. \nThese webinars are for informational purposes only and should not replace professional medical advice. Always consult your healthcare provider before making any treatment or lifestyle changes. \nAbout Our Presenter:\n \nDr. Pawel Sobczuk\nVall d’Hebron Institute of Oncology in Barcelona\, Spain \nPawel Sobczuk is a Polish medical oncologist and clinician-scientist with expertise in sarcoma and skin tumours. He currently works as a postdoctoral fellow at the Sarcoma Translational Research Group at Vall d’Hebron Institute of Oncology in Barcelona\, Spain. He is a Board member of the Polish Society of Clinical Oncology. Dr. Sobczuk is a member of the ESMO Young Oncologists Committee and ESMO Communication Committee. \nDr. Sobczuk completed his medical degree at the Medical University of Warsaw. Following his medical studies\, he undertook a residency in Medical Oncology at Maria-Sklodowska Curie National Research Institute of Oncology in Warsaw\, where he also completed his PhD in medical sciences in 2023. He has completed a scientific fellowship at the Memorial Sloan Kettering Cancer Center in New York. \nHis research primarily focuses on translational studies in sarcoma\, with a primary interest in response to immunotherapy and novel mechanisms of resistance to kinase inhibitors in GIST. Dr Sobczuk is a co-principal investigator of the EFTISARC-NEO clinical trial evaluating a novel immunotherapy combination in the neoadjuvant treatment of patients with soft tissue sarcoma. He has published more than 40 peer-reviewed articles in indexed journals and presented results in numerous international meetings. He serves as a member of the editorial board of renewed journals such as JCO Precision Oncology and Cancer Control. \nThank You to Our Sponsors:
URL:https://liferaftgroup.org/event/updates-from-ctos-2026/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
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DTSTART;TZID=America/New_York:20261208T123000
DTEND;TZID=America/New_York:20261208T123000
DTSTAMP:20261019T175008Z
CREATED:20261019T175008Z
LAST-MODIFIED:20261019T175008Z
UID:10001738-1796733000-1796733000@liferaftgroup.org
SUMMARY:Exploring a New Clinical Trial for KIT-Mutant GIST
DESCRIPTION:REGISTERThe Life Raft Group is partnering with Dr. Candace Haddox of Dana-Farber Cancer Institute to present “Exploring a New Clinical Trial for KIT-Mutant GIST” on December 8th\, 2026 at 12:30PM ET. Dr. Haddox will discuss a new clinical trial testing a combination therapy of ripretinib plus navlimetostat for GIST patients with a KIT mutation and MTAP gene deletion. She will review the rationale of the treatment\, goals of the trial\, participant eligibility\, how to enroll\, and where to get more information. A Q&A session will follow the presentation. \nThese webinars are for informational purposes only and should not replace professional medical advice. Always consult your healthcare provider before making any treatment or lifestyle changes. \nAbout Our Presenter:\n \nDr. Candace Haddox\nDana-Farber Cancer Institute \nDr. Candace Haddox is an Assistant Professor of Medicine at Harvard Medical School\, and a medical oncologist and clinical/translational investigator in the Sarcoma Center and the Center for Cancer Therapeutic Innovation at Dana-Farber Cancer Institute. Dr. Haddox’s research focuses on developing novel therapies rooted in sarcoma biology and determining mechanisms of treatment response and resistance\, particularly in gastrointestinal stromal tumors (GIST). \nDr. Haddox received her Bachelor of Science in neurobiology from the University of Miami. She completed a post-baccalaureate research fellowship at the National Institutes of Health and received her Medical Degree from the University of South Florida. Dr. Haddox completed a residency in Internal Medicine at the Mayo Clinic in Rochester\, Minnesota\, and a fellowship in Medical Oncology at Duke University\, where she also served as Chief Fellow. She joined the faculty at Dana-Farber Cancer Institute in 2021\, where she currently sees patients with sarcomas and leads clinical trials in early drug development. \nThank You to Our Sponsors:
URL:https://liferaftgroup.org/event/exploring-a-new-clinical-trial-for-kit-mutant-gist/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
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