In September 2025, we hosted our hybrid DTRF International Desmoid Tumor Research Workshop in conjunction with the DTRF Together We Will Weekend in Chicago, IL. Scroll down the agenda to watch the video recordings from the workshop.
Agenda
“The Association of Pain With Function for Adult Patients With Desmoid Tumor: Findings From the Desmoid Tumor Research Foundation Natural History Study.”
Kelly Mercier, PhD
Principal Investigator, DTRF Patient Registry & Natural History Study, The Desmoid Tumor Research Foundation
Desmoid Tumor Patient Panel on Lived Experience
“Treatment discontinuation in desmoid tumors: Factors associated with better outcomes after sorafenib discontinuation.”
Nicole Hardy, MS
Medical Student, University of Connecticut
“To see the early effect of Sorafenib on cognition, cardiovascular and reproductive functions in patients with fibromatosis.”
Sameer Rastogi, MD
Additional Professor, Medical Oncology, All India Institute of Medical Sciences (India)
“Analysis of Changes in T2-Weighted Signal Intensity and Tumor Volume and Exposure-Response in the Ringside Phase 2 Study of Varegacestat in Patients with Desmoid Tumors.”
Mrinal Gounder, MD
Medical Oncologist, Memorial Sloan Kettering Cancer Center
“Real-World Data from a Single Institution on Nirogacestat for Refractory, Symptomatic Desmoid Tumor: Dosing, Adverse Event Management and Symptom Improvement from Medical Record Review.”
Andrea Penrose, BA
Research Assistant, and Pedro Hermida de Viveiros, MD, Northwestern Medicine
“Exploring the mechanism of action in FOG-001.”
Gary Schwartz, MD, FASCO
Director, Case Comprehensive Cancer Center and Vice Dean for Oncology, CWRU School of Medicine
"Multiomic profiling uncovers integral immune molecules that drive the pathogenic fibroblast milieu in desmoid tumors."
Cristabelle De Souza, PhD
Instructor, Stanford University School of Medicine
“Concurrent genotyping and transcriptomics of Desmoid Tumor single cells and nuclei to study disease trajectory and therapeutic vulnerability: DTRF Planning project update.”
Mushriq Al-Jazrawe, PhD
Scientific Director, High Throughput Sciences, Koch Institute at MIT
"Genomic, epigenomic, and transcriptomic inter- and intra-tumor heterogeneity in desmoid tumors."
Joanna Przybyl, PhD
Assistant Professor, McGill University (Canada)
"Modeling desmoid tumors in Xenopus: Improvement and expansion of the CRISPR-based pipeline and use of lightsheet microscopy for 3D-spatial mapping of the tumor microenvironment.”
Kris Vleminckx, PhD
Group Leader, Unit of Developmental Biology, Ghent University (Belgium)
