Annual Patient Meeting
*IMPORTANT ANNOUNCEMENT FROM DTRF*
Dear Desmoid Community,
Due to the impact of the COVID-19 (Coronavirus) pandemic, DTRF is *delaying* the opening of registration for our annual September events: the DTRF Annual Patient Meeting and the DTRF Running for Answers 5K Walk/Run and Kids’ Fun Run.
Because these community-centered events are still six months away, we are taking additional time now to closely monitor the evolving situation and follow official guidance from government and health officials. During the next few months, we will be evaluating and determining what changes should be made to our annual events to accommodate the health and best interests of all participants – patients, caregivers, physicians and researchers, alike.
This is a challenging time for all, but we are grateful that our community is well-connected across the globe. Let’s continue to support one another and we will come out on the other side even stronger than before.
Thank you for your support and understanding as we navigate these uncharted waters.
The DTRF Team
The annual DTRF Patient Meeting, founded in 2007, is the DTRF signature patient support event. Held in Philadelphia, Pennsylvania, at The DoubleTree Philadelphia Center City Hotel, 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.
Save the weekend for the 2020 DTRF Patient Meeting on September 26th and Running for Answers on September 27th. Stay tuned for registration details!
Read about past event weekends in Philadelphia here.
SAVE THE WEEKEND
PATIENT MEETING AND RUNNING FOR ANSWERS ON SEPTEMBER 26-27, 2020
Details to follow.
PATIENT MEETING ON SEPTEMBER 21, 2019
The DTRF Annual Patient Meeting in Philadelphia took place on Saturday, September 21, 2019 at the Doubletree Hotel- Philadelphia Center City.
Our 2019 Patient Meeting distinguished speakers included:
Robert Benjamin, MD, Clinical Professor, Sarcoma, The University of Texas- MD Anderson Cancer Center, “Overview of desmoid tumors.”
Jesse Boehm, PhD, Scientific Director of the Cancer Dependency Map, The Broad Institute of MIT and Harvard, “Using genome-scale CRISPR screening to create a Desmoid Tumor Dependency Map.”
Casey Cunningham, MD, Chief Medical Officer, Iterion Pharmaceuticals, “Update on the recent launch of Phase I trial of Tegavivint.”
Joe Erickson, Desmoid Tumor Patient.
Joseph Erinjeri, MD, PhD, Interventional Radiologist, Memorial Sloan Kettering Cancer Center, “Cryoablation as a desmoid tumor treatment.”
Bernd Kasper, MD, PhD, Professor, Interdisciplinary Tumor Center, Sarcoma Unit, Mannheim University Medical Center, “The management of desmoid tumors: a joint global evidence-based consensus guideline approach for adult and pediatric patients.”
Alexander Lazar, MD, PhD, Director, Department of Pathology, The University of Texas- MD Anderson Cancer Center, “The pathology of desmoid tumors.”
Raphael Pollock, MD, PhD, FACS, Director, The Ohio State University Comprehensive Cancer Center, “The S45F Desmoid Story: Worth revisiting?”
Mary Smith, PhD, Senior Vice President of Clinical Research & Development, SpringWorks Therapeutics, “Discussion of the phase 3 study design and brief update.”
Kim van der Zande, Co-Founder, Contactgroup Desmoid and Christina Baumgarten, Co-Founder, Sarcoma Patients EuroNet (SPAEN) and Founder, sos-desmoid e.V. Germany, “International patient advocacy collaboration.”
Aaron Weiss, DO, Associate Professor of Pediatrics, Maine Medical Center, “The tumor board: A behind-the-scenes look.”
Breelyn A. Wilky, MD, Associate Professor, University of Colorado Anschutz Medical Campus and Martin McCarter, MD, Professor of Surgery, Surgical Oncology, University of Colorado Anschutz Medical Campus, “If in doubt, should we cut it out? Unique challenges of intra-abdominal desmoid tumors.”
Jeanne Whiting, President and Co-Founder, DTRF.
PATIENT MEETING ON SEPTEMBER 22, 2018
This September, we hosted a weekend of connecting and learning! This year’s Patient Meeting was held on Saturday, September 22nd. Registration will begin at 12pm, and the meeting will end around 5pm with mingling until 6pm. Running for Answers took place the following day, on Sunday, September 23rd.
View Patient Meeting photos courtesy of Altoonian Photography.
Our distinguished speakers were:
Casey Cunningham, MD, Chief Medical Officer, Beta Cat Pharmaceuticals, “Phase I study to evaluate safety of Tegavivint in subjects with progressive desmoid tumors.”
Benjamin Alman, MD, Professor and Chair, Department of Orthopedic Surgery, Duke University, “What we can do together in research.”
Remarks by David Croitoru, Desmoid tumor patient and advocate.
Mrinal Gounder, MD, Assistant Professor and Medical Oncologist, Principal Investigator of phase III trial of sorafenib, Memorial Sloan Kettering Cancer Center, “Phase III, randomized, double blind, placebo-controlled trial of sorafenib in desmoid tumors.”
Antoine Italiano, MD, PhD, Medical oncologist and Head of Early Phase Trials and Sarcoma Units, Institut Bergonié, France, “Pazopanib versus IV methotrexate/vinblastine in adult patients with progressive desmoid tumors.”
Carol Kessler, MD, MDiv, Child, Adolescent & Adult Psychiatrist, “Desmoid tumors: The story of a rare disease as told by its sufferers.”
Robert Lefkowitz, MD, Associate Professor, Radiology, Weill Cornell Medical College/Memorial Sloan-Kettering Cancer Center, “MR Imaging in desmoid tumors.”
Karun Sharma, MD, PhD, FSIR, Director, Interventional Radiology, Principal Investigator, Bioengineering Initiative, SZI, Children’s National Medical Center, “Non-invastive and minimally-invasive image-guided treatment options for desmoid tumors: MR-HIFU and needle ablation.”
L. Mary Smith, PhD, Vice President of Clinical Research & Development, SpringWorks Therapeutics, “Brief update on the planned Phase III study for Nirogacestat.”
Aaron Weiss, DO, Associate Professor of Pediatrics, Maine Medical Center, “A new platform for discussion of challenging desmoid tumor cases: DTRF Virtual Tumor Board.”
Breelyn Wilky, MD, Assistant Professor in Hematology/Oncology, University of Miami Sylvester Comprehensive Cancer Center, “FAQs in desmoid tumors.”
PATIENT MEETING ON SEPTEMBER 23, 2017
DTRF welcomed about 200 attendees to our annual Patient Meeting in Philadelphia, September 23, 2017. More physicians than ever attended this year, offering great opportunities for interaction with patients. We were excited to learn of plans for upcoming trials in two potential new desmoid tumor treatments. The first is a Phase III trial in Nirogacestat (“Nye-roe-gay-se-stat”, formerly known as PF-03084014), the gamma-secretase inhibitor that showed promising results in Phase I and II trials in desmoid tumors. The Phase III is being designed for both adult and pediatric patients. The second is a Phase I trial for Tegavivint, a new drug that directly interferes with beta-catenin stabilization that has shown promise in preclinical studies. We will keep you apprised when details about these trials are announced. Other talks informed us in general about the disease and treatments, about how different beta-catenin mutations respond to chemotherapies and about MRI characteristics of tumor progression. We also learned how patients can help contribute to research by participating in the tissue donation program, as well as in the DTRF Desmoid Tumor Patient Registry. Patient participation is key to the success of these important initiatives. We were inspired hearing Rachel Sitta talk about her dedication to helping fund research for a cure and how her commitment to fundraising helps her feel empowered as a patient. Prior to the Patient Meeting, an optional morning program called Healing U. was held. This was an independently-run 2-hour program for patients and caregivers that focused on supporting the body through desmoid treatments via holistic wellness and nutrition. Check out our official 2017 Patient Meeting pictures here, courtesy of event sponsor Laura A. Mikowychok Design & Media, LLC. Our list of distinguished panel of speakers included:
- R. Lor Randall, MD, FACS, Director of Sarcoma Services, Huntsman Cancer Institute, University of Utah, “Desmoid tumors: the nonmalignant malignancy.” Presentation here.
- Victor M. Villalobos, MD, PhD, Assistant Professor of Medicine, Director, Sarcoma Medical Oncology, University of Colorado – Denver, “Desmoid tumor trial using a gamma secretase inhibitor PF-03084014.” Presentation here.
- Lara Sullivan, MD, MBA, “Update on clinical trial for PF-03084014 GSI compound.”
- Benjamin Alman, MD, Professor and Chair, Department of Orthopedic Surgery, Duke University, “Collaboration for a Cure: what we’ve learned so far.” Presentation here.
- Jonathan Northrup, CEO, and Casey Cunningham, CMO, Beta Cat Pharmaceuticals, “Upcoming trial of Tegavivant (BC2059) in desmoid tumors.” Presentation here.
Beta Cat Pharmaceuticals will speak about the upcoming trial of Tegavivint, a new drug targeting desmoid malignancies. Tegavivint is the first drug that directly interferes with bbeta-cateninstabilization. Targeting beta catenin in this way may hold promise for desmoid sufferers, as the science that has evolved shows that desmoid tumors are due to mutations in the beta catenin gene, CTNNB1, which cause improper degradation of beta catenin. Tegavivint has shown promise in directly, specifically and potently reversing this condition in preclinical studies and is planned for early clinical study at the end of this year.
- Kelly Mercier, PhD, Research Scientist in Metabolomics, RTI International, “The DTRF Desmoid Tumor Patient Registry.” Presentation here.
- Michael Cassidy, MD, Assistant Professor of Surgery, Boston University School of Medicine, “MRI characteristic predictive of progression.” Presentation here.
- Rachel Sitta, Patient advocate.
- Breelyn Wilky, MD, Assistant Professor in Hematology/Oncology, University of Miami Sylvester Comprehensive Cancer Center, “Mutation phenotypes and their responses to chemotherapy.”
- Lauren Peters, RD, CSO, LDN, Fox Chase Cancer Center & Jeanes Hospital, “Nourished: Is Your Food Fueling You?”
- Barbara Van Hare, Director of Foundation Partnerships, The Rare Cancer Research Foundation, “The importance of tissue donation and Pattern.org.” Presentation here.
- Bernd Kasper, MD, PhD, Professor, Mannheim University Medical Center, Interdisciplinary Tumor Center, Sarcoma Unit, “Update on the Management of Sporadic Desmoid-type Fibromatosis: A European Consensus Initiative between Sarcoma PAtients EuroNet (SPAEN) and EORTC/Soft Tissue and Bone Sarcoma Group (STBSG).” Presentation here.
Event photos provided by
PATIENT MEETING ON SEPTEMBER 24, 2016
Our 2016 Annual Patient Meeting took place on Saturday, September 24th in Philadelphia, PA. Approximately 200 patients and caregivers joined us from 26 U.S. states, Canada, the United Kingdom and Ecuador. Prior to the meeting, patients and caregivers were welcomed by community members and invited to wear stickers designating tumor location which led to conversations and connecting. They shared their journeys by participating in the Numbers Project, an opportunity to share their journey with the world. During the meeting, experts presented on their topics, and allowed for questions from the audience. DeAnn Sorenson and Sherrie Gould were recognized for administering The Desmoidian and fostering online connections between those in the community. Meeting breaks allowed for one-on-one conversations with doctors and refreshments. View event photos here.
Our list of distinguished panel of speakers included:
- Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University, “Collaboration for a Cure: what we’ve learned so far.” Slide presentation here. Video of presentation here.
- Kelly Mercier, PhD, Research Scientist in Metabolomics, RTI International, “Natural History Study and DTRF Patient Registry.” Slide presentation here. Video of presentation here.
- Mrinal Gounder, MD, Assistant Professor and Medical Oncologist, Memorial Sloan Kettering Cancer Center; Jean Paty, PhD, Principal, and LeAnne Maddux, MA, Consultant, Quintiles Advisory Services, “Data gleaned from development of a PRO tool in desmoid tumors.”
- Lara Sullivan, MD, MBA, Vice President, Pfizer CURES, Pfizer Medical, Pfizer Inc. Topic: “Learn about update on clinical trials on Pfizer compound/a potential new treatment.”
- Raphael E. Pollock, MD, PhD, Professor of Surgery; Director, Division of Surgical Oncology, Ohio State University Comprehensive Cancer Center. Topic: “Understanding the S45F and T41A mutations in desmoid tumors. What is their significance?” Slide presentation here. Video of presentation here.
- Kris Vleminckx, PhD, Professor, Department of Molecular Biomedical Research Unit of Developmental Biology VIB, Ghent University. Topic: “Fishing for New Therapeutic Targets in the Frog Pond.” Slide presentation here.
- Geraldine O’Sullivan Coyne, MD, PhD, Staff Clinician (VP), Investigational Drug Branch, NCI- NIH. Topic: “NCI’s Phase II trial of PF-03084014 in adults with desmoid tumors/aggressive fibromatosis.”
- Sunil Sharma, MD, Division Chief, Medical Oncology at University of Utah School of Medicine, Expert in Oncology Drug Development. Topic: “New Approach to Inhibiting Beta- Catenin.” Slide presentation here. Video of presentation here.
- Raffi Avedian, MD, Assistant Professor of Orthopedic Surgery at The Stanford University Medical Center. Topic: “Magnetic resonance guided high intensity focused ultrasound for the treatment of desmoid tumors.” Slide presentation here. Video of presentation here.
Integrative Health Panel: Ian Bier, ND, PhD, LAc, FABNO, Human Nature Natural Health. Topic: “Naturopathic Oncology: What is it, and how can it help?” Presentation here. Darrin Richman, RPh, CRMT, Fox Chase Cancer Center. Topic: “Reiki: A Caring Touch.” Secili DeStefano, PT, DPT, OCS, Bodies in Motion Physical Therapy. Topic: “Optimizing Movement to Improve the Human Experience.” Presentation here.
PATIENT MEETING ON OCTOBER 17, 2015
Approximately 200 patients and caregivers attended our Annual Patient Meeting in Philadelphia, PA. Once again, this was a great opportunity for patients to connect and learn from our expert presenters. Dana Pounds, a survivor who has battled desmoids for over 15 years, addressed our crowd during the break and lifted everyone with her story of perseverence. After her talk, she trotted off the stage outfitted in a running blade which she wears since her partial leg amputation. Musicians Melissa Hirsch and Julie Manfredi provided inspiring musical entertainment prior to a wine reception to close out the day. One attendee stated, “This is the highlight of my year. The highlight of my year. I am so happy and I’ll never miss this again.” Check out our pictures here. Our list of distinguished panel of speakers included:
Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University, "Collaboration for a Cure: What We've Learned So Far." Dr. Alman provided updates on Collaboration for a Cure, where 5 promising drugs will continue to be tested.
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.”
Aimee Crago, MD, PhD, Assisting Attending Surgeon, Memorial Sloan Kettering Cancer Center, "Personalizing Management of Desmoid Tumors".
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.
Jean Paty, PhD, Practice Lead/Principle, Advisory Services, Quintiles, Panel Discussion: Patient-Reported Outcomes
Jean 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. Dr. Paty’s 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. Jean 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. Profile here.
Patient Meeting presentation here.
Amylou Dueck, PhD, Head of Biostatistics in Health Sciences Research Division, Mayo Clinic, Panel Discussion: Patient-Reported Outcomes
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.
Bernd Kasper, MD, PhD, Mannheim University Medical Center, Interdisciplinary Tumor Center, Sarcoma Unit, "The European Experience".
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).
Patient Meeting presentation here.
Robert Lefkowitz, MD, Associate Professor, Radiology, Weill Cornell Medical College/ Memorial Sloan-Kettering Cancer Center, "MR Imaging of Desmoid Tumors".
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.
Vinay Puttanniah, MD, Director of Regional Anesthesia, Memorial Sloan Kettering Cancer Center, "Pain Management".
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.
Kishore Iyer, MBBS, FRCS (Eng), FACS, Professor of Surgery and Pediatrics. Mount Sinai Medical Center, “Challenging Conventional Limits of Inoperability in Abdominal Desmoids and Sarcomas”.
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.
Patient Meeting presentation here.
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.
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.”
Raphael E. Pollock, MD, PhD, Professor of Surgery; Director, Division of Surgical Oncology, Ohio State University Comprehensive Cancer Center. “Desmoid Overview”
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.”
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.”
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.”
Shivaani Kummar, MD, Head, Early Clinical Trials Development, National Cancer Institute. “Finding a Cure for Desmoids.”
Sean P. Ryan. Desmoid tumor patient, current medical student and desmoid tumor researcher at Ohio State. Member of the Board of the Ryan Foundation.
PATIENT MEETING ON SEPTEMBER 28, 2013
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.
View event photos here.
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).
Mrinal Gounder, MD, Assistant Professor and medical oncologist at Memorial Sloan-Kettering Cancer Center.
Suzanne George, MD, Clinical Director, Center for Sarcoma and Bone Oncology, Dana Farber Cancer Institute; Assistant Professor of Medicine, Harvard Medical School.
Tony Ferlenda, Chief Executive Officer, Sarcoma Foundation of America.
Robert G. Maki, MD, PhD, Clinical Director, Professor Medicine, Hematology and Medical Oncology, Professor Orthopaedics, Mount Sinai Hospital.
Shivaani Kummar, M.D., FACP, Medical Oncology Branch and Affiliates Developmental Therapeutics Section, Adjunct Staff Clinician, Center for Cancer Research, National Cancer Institute (NCI).
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.
The 2011 DTRF Patient Symposium and Running for Answers 5K Fundraiser were a huge success! On October 22, 2011, 120 patients, family members and friends attended our 5th Annual Patient Symposium at the Philadelphia Marriott Courtyard Downtown. Our distinguished speakers were Andrew J. Wagner, MD, PhD from the Dana-Farber Cancer Institute, Arthur P. Staddon, MD from the Joan Karnell Cancer Center at Pennsylvania Hospital, Richard B. Womer, MD from the Children’s Hospital of Pennsylvania, and Joseph P. Erinjeri, MD, PhD from the Memorial Sloan-Kettering Soft Tissue Sarcoma Disease Management team. The patient symposium was followed by our second annual Philadelphia Running For Answers Race/walk. An incredible 500 runners joined in the 5K race/walk and kids fun run through Fairmont Park on a beautiful crisp, sunny fall day. Subjects discussed included tumor biology and current treatments, desmoid tumors and pediatrics, ablation therapies, and the promise shown for desmoid treatment in ongoing Sorafanib (Nexavar) and Hydroxyurea studies. We had the honor to acknowledge Dr. Thomas Ryan, a benefactor of DTRF who allows us to further research and reach our goals. 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 an inspiring talk on how desmoid patients and their supporters can and must move forward despite obstacles of pain, treatments, surgeries and disability. The Symposium left us all better informed and armed with hope for the future through continued research. It is always so moving to meet the attending desmoid tumor patients and hear their stories. It is heartening to hear how DTRF is reaching patients around the world and assisting with critical information and hope to help them navigate their medical journeys. We raised approximately $150,000 for desmoid tumor research!! This year we had extraordinary participation from patients and their families as they initiated individual and team fundraising efforts.There were several teams and individuals that raised over $10,000 each! A few individuals even raisedover $16,000 to help further the cause. Their hearts and hopes were in every dollar raised. This incredible weekend left us renewed and invigorated in our mission to fund research for a cure! Check out more pictures from the 2011 Patient Symposium here.
Andrew Wagner, MD, PhD
Dr. Wagner is a Medical Oncologist at Dana Farber Cancer Institute and an instructor of Medicine at Harvard Medical Center. His interests are with soft tissue sarcoma, bone sarcomas, GIST, and developmental therapeutics. View pressentation.
Richard B. Womer, MD
Dr. Womer is a Professor of Pediatrics at The University of Pennsylvania School of Medicine. His interests include clinical and “translational” research on the diagnosis and treatment of childhood sarcomas. View presentation.
Arthur Staddon, MD
The University of Pennsylvania -Dr. Staddon is a Medical Oncologist and is Director of the Joan Karnell Cancer Center and Director of the Bone or Soft Tissue Sarcoma Program. View presentation.
Joseph Erinjeri, MD, PhD
Dr. Erinjeri is an Interventional Oncologist and member of the Memorial Sloan-Kettering Soft Tissue Sarcoma Disease Management Team with a particular interest in the treatment of soft tissue sarcoma. He is an expert in image-guided thermal ablation of tumors.
Former Philadelphia Eagle and desmoid tumor survivor Kevin Reilly helped build enthusiasm for the event with several PSA’s on ABC television and local radio stations. He gave a moving talk on how desmoid patients can and must move forward despite obstacles of pain, cancer treatments, surgeries and even disability, such as the arm and shoulder amputation that he personally suffered
Thomas Ryan, MD
Dr. Ryan has been a major benefactor of DTRF through the James R. Ryan Family Foundation. He has been practicing as an orthopedic surgeon for the past 23 years with a special interest in hip and knee replacements and is director of the Orthopedic trauma at Borgees Hospital. In 2003, his youngest son, Sean was diagnosed with an abdominal desmoid tumor and treated with gleevic under a research protocol at University of Michigan. This explains the natural interest and support of the DTRF.
Our 2010 Patient Symposium, Running for Answers Walk and Brunch was a great success! The Patient Symposium was held at the Loews Philadelphia Hotel on November 13th. Over 75 patient and family members attended the meeting and received valuable information from our distinguished panel of experts. We also had an opportunity to tell our own stories learn from each other. Following the talks patients interacted with the experts and with each other. This has been the highlight of the event for many of our attendees. The Running for Answers 5K Run/ Walk was on November 14th at Fairmont Park. It was an absolutely beautiful fall day! There were over 260 people participating in the Kids Fun Run, 5 Mile Race or 1 Mile Walk. Pat Ciarrocchi from CBS 3 was our MC, kicking off the event. A delicious brunch immediately followed the Running for Answers event at the Marriott Courtyard providing a perfect way to end the wonderful weekend. Read the write up from our Running for Answers sponsor: Quest Diagnostics. Check out pictures of Running for Answers here.
Dr. Benjamin Alman, MD
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. He runs an active basic science research program, studying the role of signaling pathways and stem cells in embryonic development, tissue regeneration as well neoplasia in the musculoskeletal system. Dr. Alman spoke about ongoing research in the search for a cure of desmoid tumors. Dr. Alman is a DTRF grant recipient. Presentation
Dr. Andrea Marrari, MD
Dr. Marrari is a medical oncologist from The Istituto NazionaledeiTumori in Milan, Italy and spoke about medical treatments, clinical presentations and prognosis of desmoid tumors. Dr. Marrari is a visiting researcher at the Dana Farber Cancer Institute working in the Center for Sarcoma and Bone Oncology. He has done research demonstrating the activity of sunitinib in a rare sarcoma. He is currently involved in clinical research on sarcoma, with the aim of identifying biological predictive markers of response to conventional chemotherapy and new targeted therapy. He is also conducting extensive molecular characterization on selected histiotypes to identify new potential therapeutic targets. Presentation
Dr. Marcovalerio Melis, MD, F.A.C.S
Dr. Melis is currently Assistant Professor of Surgery at the New York University School of Medicine, Associate Member (Sarcoma and GI Cancer Groups) at he New York University Cancer Institute and Staff Attending Surgeon of the NY Harbor Healthcare System. He has had numerous publications on colorectal and esophageal cancer. Dr. Melis co-authored an important paper about surgical margins in the management of desmoid tumors Presentation
Dr. Stephen Skapek, MD
Dr. Skapek is Associate Professor of Pediatrics , Section of Hematology/Oncology, at the Comer Children’s Hospital at the University of Chicago and spoke about the unique dilemma of treating desmoid tumors in the pediatric population. His research interests include understanding the molecular and genetic mechanisms in the initiation of cell proliferation in the genesis of tumors. Specifically, he is studying tumor formation in and treatment of rhabydomysosarcomas, retinoblastoma, pineoblastoma and aggressive fibromatosis. Dr. Skapek is a DTRF Grant Recipient. Presentation
Presenters and DTRF Executive Committee Jeanne Whiting, Dr. Charisse Litchman and Marlene Portnoy
DTRF’s 2009 Patient Support Meeting and Fundraiser was a success! On October 15th DTRF held its third annual patient support meeting and fourth annual dinner gala. Approximately 60 patients from around the country heard this exciting roster of speakers and topics at the Patient Meeting. Following the patient meeting the dinner gala began – approximately 260 guests were entertained by Beatles band Oh-bla-di-blada while tasting the wonderful Ritz Carlton buffet selection. Money for desmoid tumor research was raised from our 3 live auction items and over 200 wonderful silent auction items ranging from sports memorabilia to vacation homes, from admittance to the Golden Globes after party to a week at a luxurious Lake Tahoe house! DTRF was also honored to have as our keynote speaker this year, Ted Kennedy, Jr. who gave an inspiring talk on his personal challenge with osteosarcoma and the obstacles we face fighting a rare disease. Check out pictures from our Patient Support meeting and Gala.
Raphael E. Pollock, MD, PhD, MD
Anderson Cancer Center, Division Head, Surgery, Professor, Surgical Oncology and Molecular & Cellular Oncology. Doctor Pollock spoke on nature of desmoid tumors.
Dina C. Lev, MD
MD Anderson Cancer Center, Cancer Biology: 2006, 2007 and 2008 DTRF Grant Recipient for “Molecular determinants of desmoid tumor development and progression.” Doctor Lev gave an overview of the results of her research to date, as well as a discussion of all other areas of research being conducted on desmoid tumors.
Richard D. Lackman, MD,
FACS, University of Pennsylvania Health System, Professor and Chair, Department of Orthopaedic Surgery; 2008 DTRF Grant Recipient for clinical trial being conducted on Hydroxyurea as a treatment for desmoid tumors. Dr. Lackman discussed preliminary data of the clinical trial.
Executive Director of Sarcoma Foundation of America, brought us up to date on the efforts and goals of the Sarcoma Foundation of America to develop a comprehensive patient registry which includes desmoid tumors. The registry’s endeavor is to collect, store, analyze and interpret data on sarcoma patients.
Suzanne George, MD
Medical oncologist at The Dana Farber Institute spoke on traditional chemotherapeutic regimes used in treating desmoid tumors.
Francis John Hornicek, MD, Ph.D
Chief of the Orthopaedic Oncology Service and Director of the Center for Sarcoma and Connective Tissue Oncology at Massachusetts General Hospital spoke on surgical treatments of desmoid tumors.
DTRF Officers Jeanne Whiting, Dr. Charisse Litchman and Marlene Portnoy
The 2008 Patient Support Meeting and Fundraiser was an amazing success! During the afternoon of May 29th approximately 65 patients and family members heard presentations from desmoid experts (SEE LIST OF PRESENTERS) We all had an opportunity to ask them questions and learn about the important research that DTRF is currently funding. Then there was time for a group discussion to support each other and hear how fellow desmoid patients are dealing with their particular disease. Then we were all off to Seasons Catering! Approximately 260 people attended the DTRF Gala Dinner that evening. Good food, great music, and wonderful silent and live auction items made for a very enjoyable evening. We raised over $50,000 alone on our auction items! Some excited winners are heading off to the Red Carpet at the Oscars, spending a “Dream Day” with the NY Giants, or off to vacation at Cabo San Lucas! The poignant video and talk from Lyon Herron, a brave young man with Gardners Syndrome highlighted the reason we were all there- to find a cure for this rare disease. Check out pictures from our Gala here.
John Chabot, MD, FACS, Chief, Division of General Surgery, New York-Presbyterian Hospital/Columbia
MD, FRCSC, Hospital for Sick Children, Toronto; 2006 and 2007 DTRF Grant Recipient for “Identifying the Desmoid Initiating Cell”.
James Church, MD, Cleveland Clinic, Department of Colorectal Surgery, Director, Jagelman Inherited Colorectal Cancer Registries.
David E. Joyner, PhD, Huntsman Cancer Institute, University of Utah, 2006, 2007 DTRF Grant Recipient for "Do Growth Factors Mediate Desmoid Tumor Invasiveness and Drug Sensitivity?".
Dina C. Lev, MD, MD Anderson Cancer Center, Cancer biology; 2006 and 2007 DTRF Grant Recipient for "Molecular determinants of desmoid tumor development and progression".
Raphael E. Pollock, MD, PhD, MD Anderson Cancer Center, Division Head, Surgery, Professor, Surgical Oncology, and Molecular & Cellular Oncology.
Bruce Shriver, PhD, Editor in Chief, The Liddy Shriver Sarcoma Initiative.
Matthew van de Rijn, Stanford University, Pathology, 2007 DTRF Grantee for "ROR2, a potential novel therapeutic target in desmoid tumors."
DTRF’s First Annual Fundraiser and Patient Meeting was a great success! There were over 125 silent auction items sold. There were 30 people in attendance at the Patient Support meeting where Dr. Lev, from MD Anderson Cancer Center, gave an informative talk about current research.
Click here to view our pictures from this special event.