2019 Research Workshop Attendees

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.

Mushriq is a postdoctoral associate at the Broad Institute’s Cancer Program under the mentorship of Dr. Jesse Boehm. He first studied desmoid tumors under the supervision of Dr. Benjamin Alman at the University of Toronto, investigating targetable pathways and cellular heterogeneity in DT. Mushriq aims to better understand the abnormal function of the specific mutations that arise in desmoids as well as help develop screening methods that take into account the cellular heterogeneity.

Christina Baumgarten started her work for desmoid patients 2005. In 2009 she, founded sos-desmoid e.V, the German association for desmoid patients and co-founded SPAEN the European association for GIST, desmoid and sarcoma patients. The aim of the European organisation is to extend information services, patient support advocacy so that patients across the whole Europe benefit. SPAEN is acting in partnership with experts, the healthcare industry and other stakeholders. SPAEN will  work to improve treatment and care of GIST, desmoid and sarcoma patients in Europe through improving information and support and by increasing the visibility of sarcoma, desmoid and GIST patients supported by leading european sarcoma, desmoid and GIST experts.

Together with her colleagues from the board of SPAEN and Prof. Kasper and Prof Hohenberger from Germany he initiated a “round table” meeting to create a consensus paper for the management of desmoid tumors based on patients and professionals expertise. The paper was published by Prof Kasper in the EJC January 2015.

Dr. Robert Benjamin is a Clinical Professor of Medicine in the Department of Sarcoma Medical Oncology at MD Anderson Cancer Center. He has worked in the area of Bone & Soft Tissue Sarcoma for more than 40 years and was the department’s former chairman for more than 20 years. Dr. Benjamin was awarded the P.H. and Fay E. Robinson Distinguished Professorship in Cancer Research as well as the Gerald P. Bodey Professorship. In 2012, Dr. Benjamin received Herman Suit Award for his exceptional contribution to CTOS. In 2013 was the recipient of the Mendelsohn Lifetime Achievement Award. Dr. Benjamin was a founding member of the Connective Tissue Oncology Society (CTOS), an international,multidisciplinary society devoted to the study of sarcomas, and he is past CTOS president. He is also on the Advisory Board of the Sarcoma Alliance for Research through Collaboration (SARC), a clinical trials group of CTOS members. He served on the NCI Program Review Group (PRG) for Sarcomas and was co-chairman of the PRG committee on Better Clinical Trials. Through SARC and CTOS, he has organized an international symposium on reassessing imaging techniques to determine response to treatment in sarcomas.

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.

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.

Dr. Hari Deshpande, associate professor of medicine in the Section of Medical Oncology, is caring for patients with sarcomas along with the Sarcoma multidisciplinary team. Previously in practice at both the New London Cancer Center and Las Vegas Cancer Center, Dr. Deshpande also has clinical interests in Sarcomas, cancers of unknown primary and thyroid cancers. He is a member of the head and neck cancer and GU cancer teams. He is the Director of the Medical Oncology Inpatient Consult service.

Dr. Palma Dileo is Consultant Medical Oncologist on the Sarcoma Unit at University College Hospital, UCLH NHS Trust, specialising exclusively in the management of soft tissue and bone sarcomas. The Sarcoma Unit at UCLH, together with the Sarcoma Unit at the Royal National Orthopaedic Hospital, is the London Sarcoma Service (www.londonsarcoma.org) which offers a comprehensive clinical service to patients of all ages with sarcoma at all sites of the body. She continued to provide patient care since 1996 (general oncology), with more emphasis on sarcoma and rare tumours starting from 1998. She completed her training at the Istituto Nazionale Tumori of Milan, Italy and at Dana-Farber Cancer Institute, Boston, USA. From 2006 to 2010 she has been Associate Physician, Medical Oncology, Istituto Nazionale Tumori, Milan working in the Sarcoma Team. She has a strong interest in early phase clinical trials and is a co-investigator for a number of clinical trials in sarcoma. She is a member of the EORTC Soft Tissue and Bone Sarcoma Group and ASCO. 

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.

Dr. Abha Gupta received her MD at the University of Toronto. She completed her pediatrics residency at Yale New Haven Children’s Hospital (New Haven, CT) and Children’s Hospital of Eastern Ontario (Ottawa) before moving back to Toronto to complete her fellowship in paediatric hematology/oncology at The Hospital for Sick Children. To complement her training, Dr. Gupta completed a one-year fellowship in Adolescent and Young Adult Oncology with a focus on sarcoma. She is currently cross appointed as a staff oncologist at both The Hospital for Sick Children and Princess Margaret Hospital. Dr. Gupta’s primary clinical and research interests include sarcoma, adolescent and young adult oncology and desmoid tumours. She is the Medical Director of the Adolescent and Young Adult Oncology Program at Princess Margaret. Here she is working with a team of people to create the infrastructure to ensure consistent and high quality delivery of information and services to young people with cancer. Dr. Gupta is also the founding medical director of CanSaRCC, the Canadian Sarcoma Research and Clinical Collaboration, and is interested in clinical trials for sarcoma and desmoid.

Prof. Peter Hohenberger heads the Division of Surgical Oncology &Thoracic Surgery at the Medical Faculty Mannheim, University of Heidelberg (UMM). He is a boarded surgeon in visceral and vascular surgery as well as in thoracic surgery and surgical intensive care. Professional education was received at the University of Erlangen including training in psychology and pathology. Surgical qualifications were received at the University of Heidelberg including senior position at the Department of Surgery followed by a Professorship on Surgical Oncology at Charité, Berlin. Being now specialized in the treatment of soft tissue tumors he was Chairman of the EORTC Soft Tissue and Bone Sarcoma Group. As a collaborator to EORTC (GI, melanoma and STBSG) since the 1980s he was member of tPRC and Board and also served on the faculty of the AACR/ASCO/FECS/ESMO course on Methods of Clinical Cancer Research. In patient relationship he is member to the advisory board of SPAEN (Sarcoma Patients Euronet), Das LEBENSHAUS and SOS-DESMOID. He chairs the German Interdisciplinary Sarcoma Group (GISG) and the Interdisciplinary Working Party on Sarcoma (IAWS) of the German Cancer Society (DKG). He also leads the Sarcoma Guideline Development group funded by the German Cancer Aid (DKH) the as well as the initiativeto establish a certification system for sarcoma centers in Germany.
The Mannheim sarcoma center is a major contributor to multinational randomized studies on the treatment of sarcoma and GIST, hosts the Data Center of GISG was co-founder of the German Sarcoma Conference. UMM is part of EURACAN for five domains and is leading a working package in Joint Action on Rare Cancer (JARC). Trial activities also included EU-funded EUROSARC and MITIGATE pursuing the treatment of imatinib-resistant GIST. Profile here.

Paul Huang, Ph.D. is Head of the Molecular and Systems Oncology Laboratory at The Institute of Cancer Research (ICR) in London, UK. He is a tenured Faculty member within the Division of Molecular Pathology and holds a Cancer Research UK Career Establishment Award. His research focuses on the use of systems biology and molecular pathology to understand aberrant signaling networks and drug resistance in sarcomas with the goal of developing biomarkers and new therapies for these diseases. He is the Deputy Director of the Joint Royal Marsden-ICR Sarcoma Research Centre, one of the largest sarcoma research centres in Europe. He serves as a member of several panels including the NCRI Sarcoma Clinical Studies Group, the NCRI Cellular Molecular Pathology (CM-Path) Clinical Trial Pathology Advisory Group (CT-PAG) and Research Advisory Committee of Sarcoma UK.

Dr. Hans Iwenofu is an Associate Professor of Pathology and the Chief of Division of Soft Tissue and Bone Pathology, Department of Pathology, The Ohio State University Wexner Medical Center. He earned his MBBS at the University of Nigeria and did his residency in Anatomic and Clinical Pathology at the University of Oklahoma Health Sciences Center, OK. He subsequently completed oncologic surgical pathology and soft tissue and bone pathology fellowships at Roswell Park Cancer Institute, Buffalo, NY and the University of Pennsylvania respectively. Dr. Iwenofu’s research interest is focused on understanding the underpinnings of sarcomagenesis, biomarker discovery and personalized medicine as it applies to soft issue and bone tumors. In a collaborative seminal study titled: “miR-29 acts as a decoy in sarcomas to protect the tumor suppressor A20 mRNA from degradation by HuR” they discovered a unique regulatory circuitry of the decoy function of miR-29 on HuR in the regulation of A20 tumor suppressor activity. This finding uncovers a completely new role of the microRNA-29 besides its tumor suppressor function and provides insightful clues as to why NF-kB is constitutively elevated in different sarcoma subtypes thus maintaining cells in a perpetual primitive state. He has published many papers focused on clinical and translational aspects of soft tissue and bone bones and serves on the editorial boards of Human Pathology, Journal of Surgical Oncology and BMC Cancer. He is a recent recipient of the DTRF grant titled: “Quantitative Proteomic Analysis of Desmoid-Type Fibromatosis”. 

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.

Alexander Lazar, MD, PhD, is a practicing academic pathologist at The University of Texas MD Anderson Cancer Center where his clinical, academic and research interests are focused on sarcoma and the genomics of solid tumors. Working within a multidisciplinary team at a high volume treatment center for desmoid tumors, over the last decade he has participated with colleagues on multiple projects involving these tumors. Profile here.

Nicole Leedom is Director of Clinical Operations at SpringWorks Therapeutics, a mission-driven medicines company dedicated to developing innovative potential new treatments for underserved patient communities.  She joined SpringWorks Therapeutics at launch in 2017 and brings 15 years of clinical operations experience from both biotechnology and CRO companies, with an expertise in clinical trial conduct and execution.  Most recently, Nicole spent 10 years at United Therapeutics as a Senior Clinical Trial Lead where she oversaw all aspects of study start-up, execution, and close-out for adult and pediatric, Phase 2-4 studies in the orphan indication of Pulmonary Hypertension.

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 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.

Dr. McCarter is a surgical oncologist who specializes in treating sarcoma, melanoma and other abdominal tumors. He is a member of the University of Colorado’s Sarcoma multidisciplinary team dedicated to finding the best solution for treating each individual’s sarcoma or desmoid tumor. He is an active translational research investigator developing targeted molecular and immunotherapy based clinical trials.

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.

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.

Dr. Pressey graduated from the University of Georgia and the Medical College of Georgia before pursuing pediatrics residency training at Cincinnati Children’s Hospital Medical Center. He trained in pediatric hematology-oncology at the Children’s Hospital of Philadelphia where he developed a keen interest in pediatric sarcomas. He spent 11 years at the University of Alabama at Birmingham School of Medicine and Children’s Hospital of Alabama where he functioned as the principal investigator (PI) for the Children’s Oncology Group (COG) phase 1 and Pilot Consortium and the Sarcoma Alliance for Research through Collaboration (SARC).

Dr. Riedel is an Associate Professor with Tenure in the Division of Medical Oncology at Duke University Medical Center. He additionally serves as Associate Director for Clinical and Translational Research for the Duke Sarcoma Program and is the Associate Program Director for the Duke Hematology-Oncology Fellowship Program. Dr. Riedel received his medical degree from Jefferson Medical College. His Internal Medicine residency, Chief Residency and Hematology-Oncology Fellowship training were all performed at Duke University Medical Center. Dr. Riedel has a clinical and research interest in identifying novel therapeutics for patients with soft tissue and bone sarcoma. He is an active participant in SARC (Sarcoma Alliance for Research through Collaboration), a member of both ASCO (American Society of Clinical Oncology) and CTOS (Connective Tissue Oncology Society) and is a member of the NCCN guidelines committee for soft tissue sarcoma. He serves on the medical advisory boards for the Sarcoma Foundation of America and the National Leiomyosarcoma Foundation, the Clinical Research Committee for SARC and is a past-chair of the ASCO Education Section for 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.

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.

Mona is Director of Medical Affairs at SpringWorks Therapeutics, a mission-driven medicines company dedicated to developing innovative potential new treatments for underserved rare disease patient communities. She joined SpringWorks in May 2018 and is experienced with medical affairs strategy and medical communication activities across several drug and biologic launches. Mona received her PhD in Immunology from Thomas Jefferson University, followed by a Postdoctoral Research Fellowship in Virology at Schering-Plough. She also served as Adjunct Professor with New York City College of Technology.

Dr. Timbergen started medical school in Maastricht, the Netherlands in 2009. After graduation in 2015 she started working as a medical doctor in the surgical ward of the Erasmus MC, Rotterdam. In 2017 she started her PhD with desmoid tumors as a specific interest. Today her research involves a broad spectrum of topics regarding desmoid tumors including pre-clinical experimental work and both retro- and prospective clinical studies.

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.

Dr. Gerlinde Wernig is an Assistant Professor of Pathology at Stanford University Medical Center. After receiving her residency training in internal medicine (Germany) and pathology (US) specializing in hematology/oncology and hematopathology, she sought postdoctoral training in leukemia research and joined Gary Gilliland’s lab where she was involved in the discovery of the now famous JAKV617F mutation. She then joined Irv Weissman’s laboratory for her second postdoc and also started her pathology residency training at Stanford University. Now, Dr. Wernig has her own lab which focuses on understanding the pathomechanisms of end stage organ fibrosis with the ultimate goal to help identify new targets for effective therapies. They have found that the transcription factor c-JUN is specifically activated in human idiopathic pulmonary fibrosis and many other human fibrotic diseases and that induction of c-Jun in mice mimics the pathological hallmarks of these diseases. Profile here.

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.