2019 Research Workshop Attendees - Desmoid Tumor Research Foundation

2019 Research Workshop Attendees

Benjamin Alman, MD, Professor & Chair, Orthopaedic Surgery, Duke University Health System

Dr. Alman is an orthopaedic clinician-scientist, whose research focuses on understanding role of developmentally important processes in pathologic and reparative process involving the musculoskeletal system. The long-term goal of his work is to use this knowledge to identify improved therapeutic approaches to orthopaedic disorders. He makes extensive use of genetically modified mice to model human disease, and has used this approach to identify new drug therapies for musculoskeletal tumors and to improve the repair process in cartilage, skin, and bone. He also works on cellular heterogeneity in sarcomas, and has identified a subpopulation of tumor initiating cells in musculoskeletal tumors. In this work, he also has identified specific cell populations that are responsible for joint and bone development. He has was recently recruited from the University of Toronto to Duke University to chair the department of orthopaedics, which was established in 2010, and includes a large musculoskeletal research component. He has half his time protected for his research work.  Dr. Alman is the Principal Investigator in the DTRF-funded collaborative project, “Collaboration for a Cure: Identifying new therapeutic targets for desmoid tumors.” Profile here.

Steven Attia, DO, Assistant Professor of Oncology, Mayo Clinic

Steven Attia, DO, is a medical oncologist at Mayo Clinic in Jacksonville, Florida. He completed fellowship training at the University of Wisconsin. His sole clinical and research focus is patients with sarcomas, desmoid tumors and chordoma. He is research chair for the Mayo Clinic Sarcoma Disease Oriented Group, ECOG Sarcoma Working Group co-chair (medical oncology), and a member of the SARC Clinical Trials Review Committee. He and his team at Mayo Clinic in Florida evaluate over 300 new sarcoma cases each year and enroll approximately 60 patients a year to therapeutic sarcoma and desmoid tumor clinical trials. Along with Dr. Benjamin Wilke, he is the recipient of a 2018 DTRF research grant to conduct a pilot study of intralesional triamcinolone acetonide for desmoid tumors.  Aside from clinical trials and patient care, Dr. Attia has an interest in optimizing the way patients with rare tumors are discussed. He chairs a CME accredited, weekly international sarcoma tumor board which he founded in 2010 that connects 10 sarcoma centers in the United States and Europe by videoconference to review challenging cases seen at these centers. Profile here.

Jesse Boehm, PhD, Scientific Director, The Broad Institute of MIT and Harvard

Jesse is the Associate Director of the Broad Institute’s Cancer Program and an Institute Scientist at the Broad. He leads a research laboratory focused on developing patient models from rare tumor types and genotypes (Cancer Cell Line Factory; CCLF) to support the Broad’s Dependency Map Initiative and assessing the function of novel cancer mutations as part of the Variant to Function (V2F) initiative. The Boehm Lab has an ultimate goal of making “precision functional genomics” a reality for cancer patients. Jesse received his B.S. in biology from MIT and his Ph.D. from Harvard University, Division of Medical Sciences. Profile here.

Danielle Braggio, PhD, Post-Doctoral Researcher on Sarcomas, Ohio State University

Dr. Danielle Braggio is a Post-Doctoral Researcher at The Ohio State University currently being mentored by Dr. Raphael Pollock. She started her sarcoma research as a Master’s student studying gastrointestinal stromal tumors (GISTs). In February 2011, she started as a graduate student at A.C Camargo Hospital, where she was introduced to the desmoid tumors research.
During her doctoral research she had the great opportunity to work with Dr. Lev and Dr. Pollock, two experts in desmoid tumors. The main goal of her work is to extensively investigate molecular driving forces in desmoid tumors. Also, her future goals include educating people about desmoid tumors.

Rashmi Chugh, MD, Assistant Professor, Medical Oncology, Department of Internal Medicine, University of Michigan Health System 

Dr. Chugh’s research focus is on the development of new therapies in the management of sarcoma and desmoid tumors. Sarcomas are cancers derived from connective tissue and span a wide range of histologic subtypes, clinical behaviors, and afflicted populations. They comprise less than 1% of all cancers and given their rarity and complexity of multi-disciplinary management, are best handled by a tertiary care sarcoma center. Our sarcoma multi-disciplinary treatment team is actively involved in research in all aspects of sarcoma care including systemic therapy, radiation therapy, and surgery. Unfortunately, systemic therapy for sarcomas is limited and only a minority of patients benefit from treatment. Dr. Chugh’s research involves conducting phase I clinical trials of novel therapies alone or in combination with standard cytotoxic therapy or targeted agents in this disease. The combinations are chosen based on rational laboratory or clinical evidence of potential benefit, and are taken to the bedside for further evaluation. Promising combinations will continue to be tested in her program in phase II trials.

Aimee Crago, MD, PhD, Assistant Attending Surgeon, MemorialSloan Kettering Cancer Center

Dr. Crago is a surgeon-scientist at Memorial Sloan-Kettering Cancer Center where she serves as an Assistant Attending. As a member of the institution’s Sarcoma Disease Management Team, she is an active participant in the care of patients with desmoid fibromatosis and coordinates clinical research and basic science efforts examining the causes of desmoid formation and progression. Her research has been funded by the American Society of Clinical Oncology, the American College of Surgeons, the Kristen Ann Carr Fund, Cycle for Survival and the MSKCC SPORE in soft tissue sarcoma. Most recently she has worked to create a nomogram that uses clinical characteristics to predict outcome after surgical resection of desmoid tumors, and she is actively engaged in work characterizing genomic changes that mediate formation of desmoid tumors.

Eldad Elnekave, MD, Director of Interventional Oncology Clinic, Rabin Medical Center

Dr. Eldad Elnekave, MD serves as the director of the Clinic for Interventional Oncology at the Davidoff Cancer Institute, Rabin Medical Center, Israel. He obtained his medical degree from Tufts University in Boston, Massachusetts and spent two years as a Howard Hughes Medical Institute Research Scholar at the National Institutes of Health in 2003-2005. Dr. Elnekave completed radiology training at Albert Einstein Medical Center and trained in Vascular and Interventional Radiology at Memorial Sloan-Kettering Cancer Center. His clinical and research focus is on the combination of anatomical and molecular targeting to treat disease in the most precise and minimally invasive method possible. His primary clinical focus is treatment of mesenchymal tumors and sarcoma. Dr. Elnekave also serves as the founding Chief Medical Officer of Zebra Medical Vision, LTD.

Audrey Helaine, Vice President of SOS Desmoide France

Bernd Kasper, MD, PhD, Professor, Interdisciplinary Tumor Center, Sarcoma Unit, Mannheim University Medical Center

Prof. Bernd Kasper studied Medicine at the University of Heidelberg. In 2001, he finalised his thesis at the German Cancer Research Centre (DKFZ) dealing with new treatment strategies for chronic myelogenous leukaemia patients using the tyrosine kinase inhibitor imatinib. To deepen his training, he stayed in London (Imperial College School of Medicine, Hammersmith Hospital, Department of Haematology) and Brussels (Jules Bordet Institute, Medical Oncology Clinic). In 2007 and 2008, he specialized in Internal Medicine and Medical Haematology/Oncology at the Department of Internal Medicine V at the University of Heidelberg. Currently, he works together with Prof. Peter Hohenberger at the Sarcoma Unit at the Interdisciplinary Tumor Center Mannheim (ITM) at the Mannheim University Medical Center, University of Heidelberg. Since 2011, he is leading the ITM. His special interest lies in the treatment of patients with bone and soft tissue sarcomas including GIST and desmoids. He is head of the study center of the German Interdisciplinary Sarcoma Group (GISG) and Secretary of the Soft Tissue and Bone Sarcoma Group (STBSG) of the European Organisation for Research and Treatment of Cancer (EORTC). Bernd Kasper is actively involved in patient advocacy work on the national as well as international level as a board member of Sarcoma Patients EuroNet (SPAEN). Profile here.

Robert Lefkowitz, MD, Attending Physician, Radiology, Weill Cornell Medical College/Memorial Sloan-Kettering Cancer Center

Dr. Lefkowitz is a radiologist specializing in abdominal and musculoskeletal imaging and he has a particular interest in imaging of soft tissue tumors. Currently, he is involved in several prospective and retrospective research projects evaluating the treatment response of desmoid tumors to medical therapy and the associated changes seen on MRI. Profile here.

Gennady Machak, MD, PhD, Chief of Oncology Service, N.N. Priorov Institute, Moscow, Russia

Gennady Machak is a medical oncologist at N.N. Priorov Institute of Traumatology and Orthopedics, Moscow. In 1987, he started hismusculo-skeletal tumor research at the N.N. Blokhin Cancer Center in the Sarcoma Department. The main goal of his work was to explore individualized, risk and response adapted neoadjuvant programs in high-grade sarcomas as well as the non-surgical local treatments (radiotherapy) in good imaging responders to induction chemotherapy. Dr. Machak is EMSOS member since 2000. In 2013 he was invited to N.N. Priorov institute to chair the oncology service. One of his current research focuses on understanding the cellular and molecular biology of desmoid tumors, in vivo assessment of tumor characteristics (fibrogensis, angiogenesis, cellularity) during W&S period and after conservative treatments using CE-MRI and DWI-MRI (DWIBS protocol). Last years Dr. Machak has worked to recruit and treat patients with HIFU tumor ablation for primary or recurrent extra-abdominal desmoid tumors. Hi is interested to further investigate this treatment strategy in Russia in cooperation with DTRF and other international teams.

Kelly Mercier, PhD, Adjunct associate, Duke University and Medical Science Liaison at Inivata, Inc.

Dr. Kelly Mercier is a DTRF grant recipient, the DTRF Natural History Study and Patient Registry Principal Investigator, a medical science liaison at Inivata, Inc., and an adjunct associate professor at Duke University. She specializes in designing, implementing, and prompting the adoption of novel diagnostic tools for oncology. She has received grants to understand the metabolic differences between desmoid tumors and normal adjacent tissue in the same patient with Dr. Ben Alman. Dr. Mercier is passionate about desmoid tumor research and is thrilled to be able to contribute her scientific knowledge to better understand and treat desmoid tumors.

Yoshiro Nishida, MD, PhD, Chairman, Department of Orthopaedic Surgery, Nagoya University Graduate School of Medicine

Dr. Yoshihiro Nishida is Associate Professor, Chairman, Department of Orthopaedic Surgery, Nagoya University Graduate School and School of Medicine. He has published more than 100 articles on Orthopaedic Oncology and basic research area. His present specialty is surgical and conservative treatment for patients with bone and soft tissue tumors, and doing translational and clinical research. He graduated from Nagoya University School of Medicine, Japan, in 1988. He was selected as a traveling fellow of Japanese Orthopaedic Association—American Orthopaedic association in 2005. He has been a PI of “Study for understanding of current status and established of treatment guideline for patients with extra-peritoneal desmoid tumors” which is selected by Health, Labour, and Welfare Ministry of Japan.

Raphael Pollock, MD, PhD, FACS, Director, The Ohio State University Comprehensive Cancer Center

Dr. Raphael Pollock is Professor and Director of the Division of Surgical Oncology at the Ohio State University Wexner Medical Center, and holds the Kathleen Wellenreiter Klotz Chair in Cancer Research. He also serves at Surgeon in Chief for the James Comprehensive Cancer Center and the Ohio State University Health System. Dr. Pollock’s work focuses on soft tissue sarcoma. His laboratory research activities are examining multiple facets of the molecular drivers underlying soft tissue sarcoma inception focus on soft tissue sarcoma, a rare cancer in adults but rather prevalent in children. He has published widely on sarcoma surgery and treatment, and his funded research includes sarcoma molecular biology and the development of novel therapeutics for this group of diseases. His laboratory work involves the discovery of oncogenes and tumor suppressor genes in soft tissue sarcoma. He is principal investigator of an $11.5 million National Cancer Institute (NCI) grant to support collaborative sarcoma translational research. The NCI Specialized Programs of Research Excellence (SPORE) grant, awarded to the Sarcoma Alliance for Research for Collaboration, represents the largest award ever to study sarcoma. Profile here.

Silvia Stacchiotti, MD, Medical Oncologist, Fondazione IRCCS Istituto Nazionale Dei Tumori

A medical oncologist, Dr. S. Stacchiotti, works in the Adult mesenchymal and rare tumor medical treatment unit, Cancer Medicine Department, Fondazione IRCCS Istituto Nazionale Tumori (INT), Milano, Italy.
Dr. Stacchiotti clinical and research activities focus on adult soft tissue and bone sarcomas, including gastrointestinal stromal tumors (GIST). She is involved in all institutional research activities on sarcoma, with a special focus on very uncommon subtypes such as chordoma, chondrosarcoma, giant cell tumor of the bone, alveolar soft part sarcoma, clear cell sarcoma, DFSP, desmoid, solitary fibrous tumor, vascular tumor, PVNS, PEComa. She is the Principal Investigator and Coinvestigator of several trials on Sarcoma and GIST. She is a member of the Italian Sarcoma Group, a national cooperative group for clinical and translational research on soft tissue and bone sarcomas, and is a member of the EORTC Soft Tissue & Bone Sarcoma Group. She collaborates to the Italian Network on Rare Tumors, a collaborative effort among Italian cancer centers, which tries to exploit distant patient sharing in order to improve quality of care and diminish health migration for rare solid cancers. She is a member of ESMO (European Society for Medical Oncology), Connective Tissue Oncology Society (CTOS) and of ASCO (America Society of Medical Oncology). She is a member of the advisory board of the Chordoma Foundation and of Desmoid Tumor Research Foundation. She is included in the list of European Medical Agency (EMA) external expert. She serves as associate Editor of the European Journal of Cancer and of Sarcoma Journal.

She has authored more than 100 scientific publications on sarcoma.

Born in 1968, dr Silvia Stacchiotti received his medical degree in 1993 in Milan, and trained at the INT. She is certified in Clinical Oncology.

Brad Tumminello, PharmD, Senior Director, US MSL Lead, SpringWorks Therapeutics


Hilly van der Zande, Co-Founder, Contactgroup Desmoid 

Representative of Contactgroup Desmoid for Dutch patients.

Kim van der Zande, Co-Founder, Contactgroup Desmoid 

Representative of Contactgroup Desmoid for Dutch patients.

Victor Villalobos, MD, PhD, Assistant Professor, Director of Sarcoma and T3 (Target-based Therapeutics Team), University of Colorado- Denver


Dr. Villalobos is a Medical Oncologist that specializing in sarcoma and early phase drug development. His primary interests in sarcoma are in the development of novel immunotherapeutic combinations and targeted therapies for the treatment of both soft tissue and bone sarcomas. The institution sees over 250 new sarcoma cases each year and serve as a regional center of expertise within the Inner-Mountain West.

Aaron Weiss, DO, Associate Professor of Pediatrics, Maine Medical Center

Dr. Weiss graduated from the University of Rochester in 1994 and subsequently earned his medical degree from the Philadelphia College of Osteopathic Medicine in 1999. He completed a pediatric emphasis internship at the Philadelphia College of Osteopathic Medicine/Albert Einstein Medical Center in 2000 followed by a pediatric residency at the AI duPont Hospital for Children in Wilmington, DE in 2003. He then went on to complete a pediatric hematology-oncology fellowship at St. Jude Children’s Research Hospital in Memphis, TN in 2006. He subsequently spent six years as an attending pediatric hematologist-oncologist at the Cancer Institute of New Jersey/University of Medicine and Dentistry of New Jersey and Jersey Shore University Medical Center. In 2012, Dr. Weiss joined the Maine Children’s Cancer Program at Maine Medical Center in Portland, ME. Dr. Weiss has particular interest in pediatric sarcomas. He has co-authored a number of publications on this subject and is currently involved in conducting pediatric clinical trials both locally and nationally in the fields of desmoid tumor and non-rhabdomyosarcoma soft tissue sarcoma. He is the Principal Investigator of the DTFR-funded project: Deregulated mTOR in Desmoid-type Fibromatosis: Identification and Validation of a New Therapeutic Target. Profile here.

Breelyn A. Wilky, MD, Associate Professor, University of Colorado Anschutz Medical Campus

Dr. Breelyn A. Wilky, MD is a sarcoma medical oncologist and clinical trialist with research interests in immunotherapy, targeted therapy and precision medicine, and early phase drug development. She has recently joined the University of Colorado School of Medicine as Associate Professor, where she is a member of the Sarcoma and Phase I Programs, expanding the portfolio of investigator-initiated clinical trials, and helping to advance immunotherapy and adoptive cellular therapy for solid tumors. As the Director of Sarcoma Translational Research, her laboratory initiatives will study tumor and immune microenvironment in sarcomas, focusing on angiogenesis as a potential resistance mechanism to checkpoint inhibitors. She is particularly interested in desmoid fibromatosis, and was awarded a DTRF research grant in 2016 to study the association of beta catenin mutation status as a predictor for chemotherapy responses.