Our Good News Holiday Campaign is the culmination of our year of "Time to Tell the Stories 2022." In this series, we celebrate the connections, the celebrations, the events and milestones that we’ve been privileged to be a part of this year. Dr. Jason Sicklick discusses his research in SDH-deficient GIST.
Dr. Shruti Bhargava, University of California San Diego, presented SDH-deficient GIST Research Updates at New Horizons 2021.
Two new studies were published in July and August 2021 focusing on SDH-deficient tumor models and how location can affect GIST tumor profiles and drug sensitivity.
This study strongly recommends genetic testing and regular biochemical testing and clinical exams for SDHx mutation carriers.
Lea el artículo para Colectivo GIST España sobre la importancia de conocer la mutación de tu gist - succinato deshidrogenasa - Abril 8, 2021
Over fifty participants attended a virtual meeting of SDH Experts in honor of GIST Awareness Day, July 13th, during Virtual Life Fest 2020. Questions were presented to the panel which included One of the first questions asked was “what specifically are your most challenging research hurdles and how can we, as patients and patient advocates from around the world help move research forward?”
Partnerships and collaborations are critical to the progress of research in rare diseases. GIST specialist & Pediatric & SDH-Deficient GIST Consortium member, Dr. Jason Sicklick, and LRG member, Debra Melikian, are working together find a cure for succinate dehydrogenase-deficient gastrointestinal stromal tumors (SDH-deficient GIST), a hereditary rare cancer syndrome which claimed the lives of Debra’s husband and her son Merak.
Dr. Andrew Blakely, Program Director, Surgical Oncology Research Fellowship, National Cancer Institute, National Institutes of Health, shares how his team works with adult SDH-deficient GIST patients.
Our Rare Disease Day offering is a whitepaper titled 'Partnership for Survival – Treating the Rarest of the Rare' detailing how a collaboration with the NIH has become a model for other advocacy groups and researchers.
Deb Melikian, patient advocate, and Dr. Jason Sicklick, GIST expert & researcher, share the story of their unique partnership which began at an LRG GIST Day of Learning in the rare partners issue of RARE Revolution Magazine.
