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DTSTART;TZID=America/New_York:20260926T080000
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SUMMARY:GDOL Minnesota
DESCRIPTION:GDOL Minnesota will take place in-person at Mayo Clinic\, Judd Hall Auditorium\, Mayo Building\, Subway Level\, Room 00\, 200 First Street SW in Rochester. \nREGISTERDownload PDF of Agenda (subject to change.) \n \nWhat is a GDOL? \nA GDOL is a GIST Day of Learning. This is a free one day event to help patients and caregivers learn more about this rare cancer\, find support\, and enhance their knowledge base to help them navigate their cancer journey. \nThe Life Raft Group is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST)\, and other rare diseases\, through patient-powered research\, education and empowerment\, and global advocacy efforts. Our vision is to empower a future fueled by data\, guiding our journey toward cures for rare diseases. \nIf you have any questions\, please contact Brian Morello at bmorello@liferaftgroup.org
URL:https://liferaftgroup.org/event/gdol-minnesota/
LOCATION:Judd Hall Auditorium\, 200 First Street SW\, Rochester\, Minnesota\, 55905
CATEGORIES:Education,Events
ORGANIZER;CN="Brian Morello":MAILTO:bmorello@liferaftgroup.org
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DTSTART;TZID=America/New_York:20261014T120000
DTEND;TZID=America/New_York:20261014T120000
DTSTAMP:20260917T191615Z
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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 \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 \nDr. John Glob\nNational Institutes of Health \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. \nHe 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. \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
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DTSTART;VALUE=DATE:20261024
DTEND;VALUE=DATE:20261025
DTSTAMP:20260917T162057Z
CREATED:20260605T160436Z
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SUMMARY:GDOL San Diego
DESCRIPTION:GDOL San Diego will take place in-person at Moores Cancer Center\, 3855 Health Sciences Dr\, 2nd floor\, La Jolla\, CA 92037 on October 24\, 2026. \nREGISTERDownload PDF of Agenda (subject to change.) \n\n \n\n \n\nWhat is a GDOL?\n\nA GDOL is a GIST Day of Learning. This is a free one day event to help patients and caregivers learn more about this rare cancer\, find support\, and enhance their knowledge base to help them navigate their cancer journey\, \nThe Life Raft Group is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST)\, and other rare diseases\, through patient-powered research\, education and empowerment\, and global advocacy efforts. Our vision is to empower a future fueled by data\, guiding our journey toward cures for rare diseases. \nIf you have any questions\, please contact Brian Morello at bmorello@liferaftgroup.org
URL:https://liferaftgroup.org/event/gdol-san-diego-2026/
LOCATION:Moores Cancer Center\, 3855 Health Sciences Dr\, La Jolla\, CA 92037\, La Jolla\, CA\, 92037\, United States
CATEGORIES:Education,Events
ORGANIZER;CN="Brian Morello":MAILTO:bmorello@liferaftgroup.org
END:VEVENT
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DTSTART;TZID=America/New_York:20261109T120000
DTEND;TZID=America/New_York:20261109T120000
DTSTAMP:20260917T210217Z
CREATED:20260917T210217Z
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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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