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.

 


 

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.
  • Raphael E. Pollock, MD, PhD, Professor of Surgery; Director, Division of Surgical Oncology, Ohio State University Comprehensive Cancer Center. Dr. Pollock is Principal Investigator of the DTRF-funded study "A rational search for novel anti-drug therapies." Profile here.
  • Mrinal Gounder, MD, Assistant Professor and medical oncologist at Memorial Sloan-Kettering Cancer Center. Dr. Gounder is the Principal Investigator in a trial partially funded by DTRF studying Nexavar/Sorafinib in desmoid tumors. Profile 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: Identifyng new therapeutic targets for for desmoid tumors.” Profile here.
  • Aaron Weiss, DO, Maine Medical Center, Maine Children’s Cancer Program, Pediatric Hematology and Oncology.   Dr. Weiss is the Principal Investigator of the DTRF-funded study, “A Pilot Study Evaluating the Use of mTor Inhibitor Sirolimus in Children and Young Adults.” Profile here.
  • Shivaani Kummar, MD, Head, Early Clinical Trials Development, National Cancer Institute. Dr. Kummar is the Principal Investigator of a Phase II trial of a gamma-secretase inhibitor. Profile here.
  • Sean P. Ryan. Desmoid tumor patient and 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 www.curesarcoma.org.
  • 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!