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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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