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.
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.
Sara Rothschild, LRG VP Program Services, met with Othon Iliopoulos, MD, Harvard Medical School/Massachusetts General Hospital Cancer Center, to discuss how to understand and make progress in SDH-related diseases.
The NIH Pediatric and Wildtype GIST Clinic is a collaboration amongst researchers, specialists, patient advocates, patients and family members, with the goal of furthering the knowledge of SDH-deficient gastrointestinal stromal tumors (GIST) in order to develop more effective therapies.
The 17th Pediatric and Wildtype GIST Clinic was held at the National Institutes of Health in Bethesda, Maryland on September 25-27, 2019. The Clinic was a collaboration amongst researchers, specialists, patient advocates, patients, and family members, with the goal of furthering the knowledge of SDH-deficient Gastrointestinal Stromal (GIST) tumors in order to develop more effective therapies.
Dr. Jason Sicklick of Moores Cancer Center at the University of California San Diego talks about the Phase II study of Temozolomide (TMZ) in advanced SDH-mutant/deficient GIST, a new study available to patients with SDH-deficient GIST.
The latest issue of LRG Science is titled, "Patient-reported Treatment Responses in Known/Likely SDH-deficient GISTS: An Analysis of The Life Raft Group Observational Registry." This study highlights the very unique research role that defines The Life Raft Group. Subscribe to LRG Science by emailing firstname.lastname@example.org with the subject line SUBSCRIBE LRG SCIENCE.
SPAEN (Sarcoma Patients EuroNet) Presents Webinar Webinar "Novel therapy options in GIST: What's on the horizon?" was presented by Dr. Jonathan Trent, Professor of Medicine, Associate Director, Clinical Research Director, Sarcoma Medical Research Program Sylvester [...]
“You're off to Great Places! Today is your day! Your mountain is waiting, So... get on your way!” ― Dr. Seuss, Oh, The Places You'll Go! Dear SDH-deficient GIST [...]