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DTSTART;TZID=America/New_York:20251203T120000
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SUMMARY:Updates from CTOS 2025
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 2025” on December 3rd 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. \nAbout Our Presenter\n \nDr. Pawel Sobczuk\nVall d’Hebron Institute of Oncology\, 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-2025/
CATEGORIES:Education,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260413T120000
DTEND;TZID=America/New_York:20260413T120000
DTSTAMP:20260325T130245Z
CREATED:20260324T133307Z
LAST-MODIFIED:20260325T130245Z
UID:10001637-1776081600-1776081600@liferaftgroup.org
SUMMARY:Long-Term Survivor Webinar
DESCRIPTION:REGISTERHosted by the The Life Raft Group\, “What We Wish We’d Known: Advice from Long-Term GIST Survivors” will take place on April 13 at 12 PM ET and features long-term survivors and mentors Kay Stolzer\, Dr. John Abrams\, Martha Smart\, and Piga Fernández. They’ll share what to do after a GIST diagnosis\, common mistakes to avoid\, and what it’s really like to live with cancer long-term. Join us for practical advice\, honest insights\, and support from people who have been there. \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 \nDr. John Abrams \nJohn Abrams has been involved with The Life Raft Group for over eight years and is the state leader for Colorado. He serves as a LRG Board Member and GIST mentor. He practiced dentistry for 35 years with an area of expertise in adult restorative dentistry highlighting esthetic restorations. He was honored by his peers as a Colorado 5280 Top Dentist. John retired from dentistry due to the side effects of Gleevec. In his “retirement” he is an equity partner in real estate investment and serves as a consultant for dental offices focusing on management and clinical skills. \nJohn grew up in St. Louis and has lived in Colorado since 1975. He graduated from Miami University (Oxford Ohio) and the University of Missouri School of Dentistry. \nAs a long time GISTer and survivor of two other primary cancers\, John hopes his story can be at least some inspiration to others on their own journey. \n \nPiga Fernández \nAs a GIST patient who was diagnosed incorrectly in 1995 with leiomyosarcoma\, Piga Fernández understands the importance of correct diagnosis and access to treatment. Piga serves as a GIST Mentor and Global Relations Consultant for The Life Raft Group. \nIn 2001\, she founded and is the Executive Director of Fundación GIST Chile\, a nonprofit organization dedicated to support GIST and other gastrointestinal patients through education\, information\, emotional support and advocacy\, with the goal of having them experience a better quality of life. \nAdditionally\, she is the Coordinator of Alianza GIST\, a consortium of GIST groups in Latin America. Her advocacy efforts in Chile have led to important changes in her country\, impacting both legislative change and raising awareness for rare diseases. \n \nMartha Smart \nMartha Smart is a 19-year survivor of high-risk small bowel GIST (12 cm\, Exon 11) and has been on Gleevec since her diagnosis in 2007. A former speech pathologist based in Midland\, Texas\, she is a proud mom\, grandmother (“NeeNee”)\, dog mom\, and devoted wife of over 53 years. \nHer diagnosis came as a complete shock following emergency surgery\, prompting her to take an active role in her care and seek treatment at MD Anderson. Since then\, she has taken more than 27\,000 Gleevec tablets and become deeply connected to the GIST community through The Life Raft Group and other networks. \nWith humor\, resilience\, and compassion\, she is passionate about sharing her experience to support and guide others living with GIST. \n \nKay Stolzer \nKay Stolzer joined the LRG Board in March 2021 and was elected to the role of Secretary/Treasurer in March 2022. \nShe has been a very active volunteer in our LRG community. Kay is one of the original 8 GIST Mentors\, a program that has grown to 32 global mentors\, and has mentored over 220 patients and caregivers\, since its inception in 2019. \nIn Kay’s earlier life\, she was an administrator for a large physicians’ group. When her children were born\, she transitioned to full time homemaker\, and was a very active volunteer in her community\, in various roles and organizations. Kay enjoys spending time with her husband\, Ira\, and visiting their children and grandchildren in New Jersey and Tennessee. \nThank You to Our Sponsors:
URL:https://liferaftgroup.org/event/long-term-survivor-webinar/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260521T120000
DTEND;TZID=America/New_York:20260521T120000
DTSTAMP:20260514T144606Z
CREATED:20260428T124406Z
LAST-MODIFIED:20260514T144606Z
UID:10001650-1779364800-1779364800@liferaftgroup.org
SUMMARY:What It Means to Join a Clinical Trial
DESCRIPTION:REGISTERHosted by The Life Raft Group\, join us on May 21 at 12 PM ET for a candid\, informative conversation about stepping into a clinical trial. Rashmi Chugh\, MD of University of Michigan Rogel Comprehensive Cancer Center will present how clinical trials work\, who they’re for\, and what you can really expect and Dirk Niggemeyer\, GIST patient\, will share his personal journey navigating two clinical trials. \nWhether you’re newly diagnosed\, exploring new treatment options\, or simply want to better understand clinical trials\, this session will help you make more informed decisions with confidence. \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 \nDr. Rashmi Chugh\nUniversity of Michigan Rogel Comprehensive Cancer Center\n \nDr. Rashmi Chugh is a Professor of Internal Medicine in the Division of Hematology/Oncology at the University of Michigan Rogel Comprehensive Cancer Center\, Associate Division Chief of Clinical Services of Hematology/Oncology\, and Sarcoma Clinical Research Team Co-Leader. Her clinical practice is focused on the care of patients with bone and soft tissue sarcoma including gastrointestinal stromal tumors.  Dr. Chugh’s research involves conducting early and late phase clinical trials of novel therapies alone or in combination with a goal to advance the care of sarcoma patients. She also is Medical Co-Director of the Michigan Adolescent and Young Adult (AYA) Oncology Program and has a particular interest in the care and research surrounding the unique challenges this population faces. \n \nDirk Niggemeyer\nPatient Advocate\n \nDirk Niggemeyer was diagnosed with GIST (KIT Exon 11) in July 2018 when he went from Engineering Manager and youth soccer coach to palliative care patient overnight. He continued working until late 2021. Dirk has participated in two medical studies: For 15 months\, he was in the control group in the Phase 3 Sutent vs Qinlock study\, and he has been participating in the IDRX-42 Phase 1b study for the last 22 months. \nThank You to Our Sponsors:
URL:https://liferaftgroup.org/event/what-it-means-to-join-a-clinical-trial/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260530T130000
DTEND;TZID=America/New_York:20260530T130000
DTSTAMP:20260430T145715Z
CREATED:20260424T124559Z
LAST-MODIFIED:20260430T145715Z
UID:10001641-1780146000-1780146000@liferaftgroup.org
SUMMARY:Understanding GIST/Role of Clinical Trials
DESCRIPTION:REGISTERGIST Sarcoma Life Raft Group Canada is holding an Online Only event on\nSaturday May 30th\, 2026 at 1:00pm. \n We will be sharing our perspective on Understanding GIST and The Role of Clinical Trials.\n \nWe will be presenting an updated GIST 101 with David Josephy.  We will also be reviewing how to navigate the Clinical Trials website and when to consider a trial with Gabriel Melkonian. We will also hear from our member – Robert Kirschman who has participated in clinical trials during his journey to share his experience.
URL:https://liferaftgroup.org/event/gist-clinical-trials-lrg-canada/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="GIST Sarcoma Life Raft Group Canada":MAILTO:yvonne.nunnaro@liferaftgroup.ca
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260601T120000
DTEND;TZID=America/New_York:20260601T120000
DTSTAMP:20260514T144521Z
CREATED:20260505T175855Z
LAST-MODIFIED:20260514T144521Z
UID:10001653-1780315200-1780315200@liferaftgroup.org
SUMMARY:Expert Nutrition & Exercise Advice
DESCRIPTION:REGISTERHosted by The Life Raft Group\, join us in honor of National Cancer Survivors Month for an empowering and informative webinar\, “Expert Nutrition & Exercise Advice for Sarcoma Patients” taking place on June 1st at 12 PM ET. \nThis special session will feature Dr. Loren Yavelberg\, Post-Doctoral Associate\, CEP\, ACSM-ACS Exercise Oncology Specialist\, and Dr. Harleen Kaur\, a behavioral scientist with a PhD in Nutrition Sciences\, both from the University of Miami. \nTogether\, they will share practical\, evidence-based guidance on how to support your body through every stage of the cancer journey. From preparing for surgery to rebuilding strength afterward\, the discussion will explore the role of nutrition\, physical activity\, and overall wellness in cancer care. You’ll learn about different dietary approaches\, exercise programs\, and what current research says about their impact. \nWhether you’re newly diagnosed\, in treatment\, or navigating survivorship\, this webinar will provide tools and insights to help you feel stronger\, more informed\, and supported. A Q&A session will follow the presentations. \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 \nDr. Loren Yavelberg\nUniversity of Miami\n \nDr. Loren Yavelberg is an exercise physiologist with a PhD in Applied Cardiopulmonary Physiology whose research focuses on exercise oncology\, lifestyle medicine\, and supportive care interventions across the cancer continuum. His work integrates clinical trials\, community-based programming\, and behavioral strategies to improve treatment tolerance and patient outcomes. \n \nDr. Harleen Kaur\nUniversity of Miami\n \nDr. Harleen Kaur is a behavioral scientist with a PhD in Nutrition Sciences from the University of Alabama at Birmingham\, where she was supported by the T32 Cancer Prevention and Control Training Program at O’Neal Comprehensive Cancer Center. She is currently supported by the T32 Training to Reduce Burden across the Cancer Control Continuum Multidisciplinary Program at Sylvester Comprehensive Cancer Center\, where she is advancing her training in lifestyle medicine and oncology research. Her research focuses on the design\, implementation\, and evaluation of multibehavior diet and physical activity interventions during active cancer treatment and survivorship. Her work aims to advance precision lifestyle medicine through scalable\, digitally supported behavioral strategies\, leveraging digital technologies to expand reach and incorporating artificial intelligence to enhance personalization. \nThank You to Our Sponsors:
URL:https://liferaftgroup.org/event/nutrition-exercise-advice-for-sarcoma-patients/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260617T130000
DTEND;TZID=America/New_York:20260617T130000
DTSTAMP:20260707T160557Z
CREATED:20260529T161111Z
LAST-MODIFIED:20260707T160557Z
UID:10001656-1781701200-1781701200@liferaftgroup.org
SUMMARY:GIST Updates from ASCO 2026
DESCRIPTION:REGISTERASCO (American Society of Clinical Oncology) is an important conference in the oncology community where new scientific research updates are shared. The Life Raft Group is excited to partner with Hirotaka Miyashita\, MD PhD of UC San Diego Health\, who will summarize abstracts and presentations that were presented during this conference that are relevant to the GIST patient community. Join us June 17th at 1pm for this virtual presentation. 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. Hirotaka Miyashita\nUCSD Moores Cancer Center\n \nHirotaka Miyashita\, MD\, PhD\, is a board-certified medical oncologist who specializes in treating patients with sarcomas\, including rare and complex soft tissue and bone tumors. He is co-leader of the Sarcoma Disease Team at Moores Cancer Center\, and also leads and participates in biomarker-driven early-phase clinical trials to bring innovative therapies to patients across cancer types. \nDr. Miyashita prioritizes shared decision-making\, empowering his patients to make choices aligned with their goals and values. In caring for patients with sarcomas\, rare and complex cancers that often require individualized care\, he finds his work most rewarding when he can help patients live fulfilling lives with treatment plans that reflect their priorities and values. \nWith training in bioinformatics\, he leverages his expertise to integrate and analyze complex biomedical data in support of precision oncology and translational cancer research. He has published multiple articles on clinical oncology and has experience designing and conducting early-phase clinical trials. He is a strong advocate for community-oriented\, patient-centered clinical trials\, aiming to improve access and equity in cancer research. \nDr. Miyashita completed a hematology/oncology fellowship at Dartmouth Cancer Center as well as a clinical pharmacology fellowship at Dartmouth Hitchcock Medical Center. He completed a residency in internal medicine at Icahn School of Medicine at Mount Sinai (Beth Israel) and a residency in general medicine at the University of Tokyo Hospital in Japan. He also has a PhD in bioinformatics from University of Tsukuba in Japan. \nHe is a member of multiple national and international professional societies\, including the American Society of Clinical Oncology\, the Connective Tissue Oncology Society\, and the SWOG Sarcoma Working Group. Dr. Miyashita is board certified in internal medicine and medical oncology. \nThank You to Our Sponsors:
URL:https://liferaftgroup.org/event/gist-updates-from-asco-2026/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261014T120000
DTEND;TZID=America/New_York:20261014T120000
DTSTAMP:20261008T174908Z
CREATED:20260917T191547Z
LAST-MODIFIED:20261008T174908Z
UID:10001669-1791979200-1791979200@liferaftgroup.org
SUMMARY:NF1 & GIST: Expert and Patient Perspectives
DESCRIPTION:REGISTERJoin The Life Raft Group on October 14 at 12:00 PM for a patient-centered discussion about Neurofibromatosis type 1 (NF1) and its connection to GIST. Dr. Ciara Kelly of Memorial Sloan Kettering Cancer Center and Dr. John Glod of the National Institutes of Health will discuss what patients should know about NF1-associated GIST\, including current research and treatment considerations. Life Raft Group Board member and NF1/GIST patient Rob Taylor will also share his personal experience\, offering a patient perspective on navigating these diagnoses. \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 \nDr. Ciara Kelly\nMemorial Sloan Kettering Cancer Center\n \nCiara Kelly\, MBBCh\, BAO is a medical oncologist at Memorial Sloan Kettering Cancer Center who has expertise in treating and researching bone and soft tissue sarcomas and merkel cell carcinoma. She works very closely with a team of medical oncologists\, surgeons\, radiation oncologists\, nurses\, and patient support advocates. \nDr. Kelly’s research aims to develop new and more personalized therapies to treat sarcomas. She is actively involved in developing and designing clinical trials that will look at novel agents that target molecular changes within tumors. She is also studying innovative combination immunotherapy options that will harness a person’s own immune defenses to fight their cancer. \nDr. Kelly has a particular interest in advancing understanding of gastrointestinal stromal tumors and other sarcomas at the molecular level. She is using liquid biopsies to analyze tumor DNA in the blood and tumor biopsies to uncover a biomarker that will ultimately help match the best treatment option with each individual person’s tumor. Dr. Kelly is committed to designing and developing novel therapeutic clinical trials for GIST patients that incorporate correlative studies which provide an opportunity to further our understanding of this disease. \n \nDr. John Glod\nNational Institutes of Health \nDr. Glod obtained his M.D. and Ph.D. from the University of Colorado in Denver and trained in pediatrics and pediatric oncology at Cincinnati Children’s Hospital\, Johns Hopkins Hospital\, and the Pediatric Oncology Branch of the NCI. Following a fellowship in neuro-oncology at the NCI\, Dr. Glod served as faculty in the departments of pediatrics and pharmacology at Rutgers Cancer Institute of New Jersey. Dr. Glod currently serves as the Clinical Director of the Pediatric Oncology Branch in the Center for Cancer Research at National Cancer Institute. Dr. Glod’s research interests are focused on early stage clinical trials for pediatric patients and rare pediatric solid tumors including multiple endocrine neoplasia-related medullary thyroid cancer\, SDH-deficient gastrointestinal stromal tumor\, and tumors of the central nervous system. \n \nRob Taylor\nGIST Advocate\n \nRob Taylor is a GIST/NF1 patient\, Life Raft Group Board Member\, LRG Health Equity Council member\, and GIST Mentor. Drawing from his own experience navigating NF1 and GIST\, Rob is passionate about helping others better understand their diagnosis and feel empowered to advocate for the care they deserve. He dedicates significant time to GIST education\, patient support\, and advocacy\, working to ensure that the patient voice is represented in research\, healthcare\, and the broader GIST community. \nThank You to Our Sponsors:
URL:https://liferaftgroup.org/event/nf1-gist-expert-and-patient-perspectives/
CATEGORIES:Education,Events,Webcast
ORGANIZER;CN="Rebecca Pauley":MAILTO:rpauley@liferaftgroup.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261109T120000
DTEND;TZID=America/New_York:20261109T120000
DTSTAMP:20260924T173830Z
CREATED:20260917T210217Z
LAST-MODIFIED:20260924T173830Z
UID:10001670-1794225600-1794225600@liferaftgroup.org
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261110T120000
DTEND;TZID=America/New_York:20261110T120000
DTSTAMP:20261015T172934Z
CREATED:20261015T172934Z
LAST-MODIFIED:20261015T172934Z
UID:10001737-1794312000-1794312000@liferaftgroup.org
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261118T120000
DTEND;TZID=America/New_York:20261118T120000
DTSTAMP:20261029T154349Z
CREATED:20260804T182302Z
LAST-MODIFIED:20261029T154349Z
UID:10001668-1795003200-1795003200@liferaftgroup.org
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261202T120000
DTEND;TZID=America/New_York:20261202T120000
DTSTAMP:20261019T174952Z
CREATED:20261019T174952Z
LAST-MODIFIED:20261019T174952Z
UID:10001739-1796212800-1796212800@liferaftgroup.org
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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