Annual DTRF Patient Meeting

The annual DTRF Patient Meeting, founded in 2007, is the DTRF signature patient support event. 

IMG 8945 reducedHeld in Philadelphia, Pennsylvania, it always takes place on a Saturday, the day before our annual Running for Answers 5K Run/ Walk. This allows patients, family members and friends to make a weekend of it in beautiful Philadelphia, spending a day at the Patient meeting connecting with other desmoid tumor patients and participating in informative lectures and roundtables on desmoid tumors, followed by a race/walk the next day. 

Register with DTRF to receive updates on this special weekend.


2015 Patient Meeting on October 17, 2015

DTRF's annual Patient Meeting will take place at the Sheraton Philadelphia Downtown Hotel on Saturday, October 17th. 

Register here! Visit for all the information you need, from lodging to fundraising support.

Our list of distinguished panel of speakers included: 

  • Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University. 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. 
  • Aimee Crago, MD, PhD, Memorial Sloan 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. Profile here. 
  • Amylou Dueck, PhD, Head of Biostatistics in Health Sciences Research Division, Mayo Clinic. Amylou C. Dueck, Ph.D., joined Mayo Clinic in Rochester, Minn., as a lead statistician in 2005 after receiving a doctoral degree in statistics from Arizona State University. In May 2007, she transferred to the Mayo Clinic campus in Arizona, where she is the current head of the Section of Biostatistics in the Division of Health Sciences Research. Dr. Dueck's primary role at Mayo Clinic is designing and analyzing clinical trials in hematologic malignancies, though she additionally collaborates with investigators in neurology and other departments on studies of various designs. Profile here. 
  • Kishore Iyer, MBBS, FRCS (Eng), FACS, Professor of Surgery and Pediatrics. Mount Sinai Medical Center. Kishore Iyer is director of adult and pediatric intestinal transplantation at Mount Sinai Medical Center in New York, surgical director of pediatric liver transplantation and an associate professor of surgery and pediatrics at the Mount Sinai School of Medicine. Dr. Iyer is also director of the transplant surgery fellowship program at Mount Sinai. Dr. Iyer trained in general surgery and pediatric surgery in the UK where he worked with Dr Adrian Bianchi and developed his early interest in short bowel syndrome and the use of intestinal lengthening procedures. He pursued research at the Great Ormond Street Hospital for Sick Children in London, winning the 1996 British Association of Pediatric Surgeons Prize for his pioneering work identifying phytosterols in soy-based lipid emulsions as a potential cause for parenteral nutrition-associated liver disease in patients with intestinal failure. Kishore trained in transplant surgery at Chicago and Omaha, working as a liver and intestinal transplant surgeon at Omaha for almost 4 years. He was responsible for establishing the intestinal rehabilitation program in Omaha, which he directed before moving to Chicago to establish and direct the intestinal transplantation and rehabilitation program at Northwestern University/Children’s Memorial Hospital. His current clinical and research interests are in the areas of surgical management of intestinal failure, intestinal transplant and TPN associated liver disease, as well as complex abdominal tumors at the mesenteric root and portal hypertension surgery. He has published extensively in the areas of intestinal failure and TPN-associated liver disease as well as intestinal and pediatric liver transplantation. Dr. Iyer is a Fellow of the Royal College of Surgeons of England and a Fellow of the American College of Surgeons. He was until recently on the Pediatric Committee of UNOS (United network for Organ Sharing) and a director on the Board of Trustees of the Oley Foundation, a large support group and information resource for patients with intestinal failure. 
  • Bernd Kasper, MD, PhD, Mannheim University Medical Center, Interdisciplinary Tumor Center, Sarcoma Unit.  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 of the Interdisciplinary Tumor Center Mannheim (ITM) at the Mannheim University Medical Center, University of Heidelberg. Since 2011, he is the Leading Physician and coordinator of the ITM. Since 2002, 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 is active in national and international study groups (AIO, EORTC).
  • Robert Lefkowitz, MD, Associate Professor, 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. 
  • Jean Paty, PhD, Principal, Advisory Services, Quintiles. Dr. Paty is an acknowledged leader in the effective strategies and practices of capturing patient perspective data for use in the clinical development and commercial success of new medical products. He has not only published extensively in the areas of Patient Reported Outcomes (PRO) and electronic PRO (ePRO), but also on the regulatory guidance for development and implementation of ePRO. He has worked closely with the international industry and regulatory agencies on ePRO best practices. His work is well-referenced in a wide variety of peer-reviewed journals and in numerous conferences and events, where he has presented his findings on the scientific, clinical, and regulatory implications of Clinical Outcome Assessment (COA) data collection in clinical trials. Dr. Paty has a B.S. in Psychology from the University of Toronto and an M.S. and Ph.D. in Psychology from the University of Pittsburgh. 
  • Vinay Puttanniah, MD, Director of Regional Anesthesia, Memorial Sloan Kettering Cancer Center. Dr. Puttaniah is a board-certified anesthesiologist with additional expertise and training in pain medicine. As a member of both the Anesthesiology Service and the Pain Service in the Department of Anesthesiology and Critical Care Medicine, his clinical work involves delivering anesthesia as well as treating postoperative pain. He also treats cancer pain using medications, nerve blocks, intrathecal drug delivery systems, radiofrequency techniques, and neurolytic blocks. Profile here. 


2014 Patient Meeting on September 27, 2014

Roughly 270 patients, their families and supporters gathered for a weekend of information and hope at the 8th annual DTRF Patient Meeting.

We enjoyed hearing from Casey Sonke and former Philadelphia Eagle Kevin Reilly who shared their desmoid tumor stories and inspired us with their courage, positive outlooks and humor.

Desmoid tumor survivor Brooke Jacob and pianist Julie Manfredi lifted us with a fun musical medley at the end of the day. A wine reception followed the meeting, allowing for closer connections and the opportunity to ask informal questions to the physicians and researchers. It was an inspiring day for us all as we became better informed and uplifted for our journeys ahead.

Check out our Patient Meeting pictures here!  

Our list of distinguished panel of speakers included: 

  • Joseph Erinjeri, MD, Interventional Radiology, Memorial Sloan-Kettering Cancer Center. Of particular interest for desmoid tumor patients is Dr. Erinjeri's experience with cryoablation on desmoid tumors. Profile here. 
  • Chandrajit P. Raut, MD, Director, Surgical Oncology, Sarcoma, Associate Professor of Surgery, Harvard Medical School.  Dr. Raut published a paper on “Desmoid fibromatosis and pregnancy: A multi-institutional analysis of recurrence and obstetric risk.” Article here. Profile here. Patient Meeting Presentation here.
  • Raphael E. Pollock, MD, PhD, Professor of Surgery; Director, Division of Surgical Oncology, Ohio State University Comprehensive Cancer Center. “Desmoid Overview” Profile here.
  • Mrinal Gounder, MD, Assistant Professor and medical oncologist at Memorial Sloan-Kettering Cancer Center. ”A Phase III Study of Sorafenib in Desmoid Tumors: An Update.” Profile here. Clinical trial presentation here.
  • Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University. Dr. Alman is the Principal Investigator in the DTRF-funded collaborative project, “Collaboration for a Cure: What We’ve Learned So Far.” Profile here.
  • Aaron Weiss, DO, Maine Medical Center, Maine Children’s Cancer Program, Pediatric Hematology and Oncology.   “Using an mTOR Inhibitor as a Targeted Therapy to Treat Children and Young Adults with Desmoid Tumor.” Profile here.
  • Shivaani Kummar, MD, Head, Early Clinical Trials Development, National Cancer Institute. “Finding a Cure for Desmoids.” Profile here.
  • Sean P. Ryan. Desmoid tumor patient, current medical student and desmoid tumor researcher at Ohio State. Member of the Board of the Ryan Foundation.

Read the report of the 2013 Patient Meeting below, and check out pictures here !


2013 Patient Meeting

Roughly 200 patients and their families and supporters gathered for a weekend of new information, new connections and hope at the 7th annual DTRF Patient Meeting held on Saturday, September 28 from 1:00-6:00 pm at the Sheraton Downtown Philadelphia.
Our distinguished speakers included Aimee Crago, MD, PhD (Memorial Sloan-Kettering Cancer Center); Tony Ferlenda (CEO, Sarcoma Foundation of America); Suzanne George, MD (Dana Farber Cancer Institute); Mrinal Gounder, MD (Memorial Sloan-Kettering Cancer Center); Robert G. Maki, MD, PhD (Mount Sinai Hospital); Matt van de Rijn, MD, PhD (Stanford University Medical Center).
Subjects discussed included:  important overviews of current and promising new systemic treatments for desmoid tumors; surgery vs. wait-and-observe; the development of a prognostic nomogram for prediction of tumor recurrence; the continuing search to find genomic predictors of tumor behaviors; new technology that allows researchers to use paraffin-preserved tissues instead of needing frozen tissues (contact DTRF to donate yours!); information about the Nexavar trial being conducted in 100 hospitals nationwide; and, information about two desmoid clinical trials run by the National Cancer Institute’s rare tumor iniative.
We also loved hearing from Matt Zechmann and former Philadelphia Eagle Kevin Reilly who shared their desmoid tumor stories and inspired us with their courage, positive outlooks, and humor.  
Broadway entertainment from Tony-nominated singer, Orfeh, and pianist, Steven Jamail, brought a bright mood at the end of the day.  A wine and snacks hour allowed for closer connections and commiserating as we could share with each other and also ask informal questions of the physicians and researchers.  It was an inspiring day for all as we became better informed and uplifted for our journeys ahead.

During the Patient Meeting, the following distinguished panel of speakers for presentations and breakout sessions included:

  • Aimee Crago, MD, PhD, Memorial Sloan-Kettering Cancer Center. Dr. Crago is a surgical oncologist who specializes in the treatment of patients with soft tissue sarcomas. She is a member of Memorial Sloan-Kettering’s Sarcoma Disease Management Team. She has an MD from Harvard Medical School; and a PhD from Cambridge University (UK). Patient Meeting presentation here.
  • Tony Ferlenda, Chief Executive Officer, Sarcoma Foundation of America. Visit
  • Suzanne George, MD, Clinical Director, Center for Sarcoma and Bone Oncology, Dana Farber Cancer Institute; Assistant Professor of Medicine, Harvard Medical School. Profile here.
  • Mrinal Gounder, MD, Assistant Professor and medical oncologist at Memorial Sloan-Kettering Cancer Center. Profile herePatient Meeting presentation here.
  • Robert G. Maki, MD, PhD, Clinical Director, Professor Medicine, Hematology and Medical Oncology, Professor Orthopaedics, Mount Sinai Hospital. Profile here.
  • Matt van de Rijn, MD, PhD, Stanford University Medical Center, Professor, Department of Pathology; Researcher, The van de Rijn & West lab.   Profile here.  Patient Meeting presentation here.
  • Shivaani Kummar, M.D., FACP, Medical Oncology Branch and Affiliates Developmental Therapeutics Section, Adjunct Staff Clinician, Center for Cancer Research, National Cancer Institute (NCI). Profile here. Patient Meeting presentation here.


2012 Patient Meeting

The DTRF Patient Meeting gives patients and family members the opportunity to hear from the experts and learn about the most current treatment options and research. Check out pictures from this special day here!

As one patient commented, "I just wanted to tell you how incredibly informative the DTRF Patient Symposium was. The doctors that presented did a wonderful job in giving an overview of the disease and current treatment options... I know so much more now than I did before."

On October 20, 2012, 160 patients, family members and friends attended our 6th Annual Patient Symposium at the Philadelphia Marriott Courtyard Downtown.  Our distinguished speakers were Raphael E. Pollock, MD, PhD (MD Anderson Cancer Center), Mrinal Gounder, MD (Memorial Sloan-Kettering Cancer Center), Dina C. Lev, MD (MD Anderson Cancer Center), James Church, MD (Cleveland Clinic) and Benjamin Alman, MD (University of Toronto). 

Subjects discussed included tumor biology and current treatments, the ongoing Sorafanib (Nexavar) demoid study, the activity of Nefapam in desmoid tumors, beta catenin mutations in desmoids and treatment of desmoids in FAP.

  • Raphael E. Pollock, MD, PhD (MD Anderson Cancer Center) - Dr. Pollock is Head of the Division of Surgery, Professor and Chairman of the Department of Surgical Oncology, and Professor of Cancer Biology at The University of Texas M. D. Anderson Cancer Center, Houston, Texas where he also is the incumbent in the Senator A. M. Aiken, Jr. Distinguished Chair. His clinical and research interests involve the treatment of soft tissue sarcoma. view presentation
  • Mrinal Gounder, MD (Memorial Sloan-Kettering Cancer Center)- Dr. Gounder is an Assistant Professor and medical oncologist at Memorial Sloan-Kettering Cancer Center specializing in the care of patients with sarcomas of soft tissue and bone and developing new drugs in cancer. He has a special clinical and research interest in desmoid tumors and recently showed for the first time that sorafenib is an active drug in desmoid tumors. He will be the lead investigator on an exciting upcoming nexavar study. Dr. Gounder is the Scientific Director of the Desmoid Tumor Research Foundation.
  • Dina C. Lev, MD (MD Anderson Cancer Center) - Dr. Lev is a DTRF Grant Recipient and is an Assistant Professor of Cancer Biology at the University of Texas, MD Anderson Cancer Center and has made significant progress in the understanding of desmoid tumors. Dr. Lev's research has involved the role of CTNNB1 45F mutation as a potential molecular predictor of recurrence for desmoid tumors.
  • James Church, MD (Cleveland Clinic) - Dr. Church is Director of the Jagelman Inherited Colorectal Cancer Registries at the Cleveland Clinic and has a special interest in inflammatory bowel disease, colorectal cancer, inherited colorectal cancer and colonoscopy. He holds the Victor Fazio Chair of Colorectal Surgery at the Cleveland Clinic and is Director of the Weiss Center for Hereditary Colorectal Cancer and Vice Chairman of the Department of Colorectal Surgery. Dr. Church's presentation will be of special interest to FAP patients.
  • Benjamin Alman, MD (University of Toronto) - Dr. Alman is a professor of surgery, a member of two graduate school faculties and a member of two graduate collaborative programs at the University of Toronto. He is a senior scientist in the Research Institute of The Hospital for Sick Children with an appointment in the program in Developmental and Stem Cell Biology. Dr. Alman is also the Vice Chair of Research within the Department of Surgery at the University. view presentation

Kevin Reilly, a former NFL player whose career with the Philadelphia Eagles was cut short by an arm and shoulder amputation from a desmoid tumor, gave a talk inspiring us to move ahead with courage.

Definite highlights were two speeches given by celebrity Rosie O’Donnell at both the Patient Meeting and Running for Answers.  With her characteristic humor she gave a lighter perspective to our plight as desmoid patients and hope for the future through raising awareness and funding for research.

Dr. Mehmet Oz of the famed Dr. Oz show sent a special video to play at the meeting where he expressed his support of DTRF and his desire to build awareness for the need to support desmoid tumor research.

The patient breakout sessions allowed for closer connections and commiserating as we could share with each other and also ask questions of the physicians and researchers.  It was an informative and inspiring day for all as we were renewed in our quest for a cure and uplifted for our journeys ahead.

Check out the details from our Patient Meetings and Running for Answers events in 2007, 2008, 2009, 2010 and 2011!