WELCOME! DTRF Western Regional Patient Meeting South San Francisco, - PowerPoint PPT Presentation

WELCOME! DTRF Western Regional Patient Meeting South San Francisco, April 13, 2019

Our Mission …to aggressively fund research to accelerate the development of improved therapies, and ultimately find a cure for desmoid tumors. We collaborate with dedicated researchers and clinicians worldwide to improve the lives of patients through education, awareness and support. 2019 Western Regional Patient Meeting | San Francisco

2018-19 Research Grant Funding  The Broad Institute of MIT and Harvard  Mayo Clinic  Hospital for Sick Children, Toronto, Ontario, Canada  Duke University  Ohio State University Comprehensive Cancer Center  Stanford University  Sylvester Comprehensive Cancer Center University of Miami  Nagoya University Graduate School of Medicine  University of Heidelberg, Germany  Ghent University, Belgium 2019 Western Regional Patient Meeting | San Francisco

DTRF International Desmoid Tumor Research Workshop 2019 Western Regional Patient Meeting | San Francisco

2018 Meeting Attendees University of Toronto University of Minnesota   Iterion Pharmaceuticals Children's Hospital, Los Angeles   The Mayo Clinic Nagoya University Graduate School of Medicine   SPAEN/ SOS Desmoid The Mayo Clinic   The Broad Institute of Harvard and MIT The Ohio State University   Fondazione IRCCS Istituto Tumori Milano Stanford University   The Desmoid Tumour Foundation of Canada Sarcoma Alliance for Research Through   Collaboration (SARC) University College London Hospitals  Indiana University Rabin Medical Center   Children’s National Medical Center Focused Ultrasound Foundation   Contactgroup Desmoid Mt. Sinai Hospital, Sinai Health System/Lunenfeld-   Tanenbaum Res. Inst/Sinai Health System Fondazione IRCCS Istituto Nazionale Dei Tumori  Memorial Sloan Kettering Cancer Center SpringWorks Therapeutics   Virgen Del Rocio University Hospital Erasmus Medical Center Cancer Institute   Mannheim University Medical Center, University of MD Anderson Cancer Center   Heidelberg Contactgroup Desmoid  Institut Bergonie Duke University   Mannheim University Medical Center Ghent University   IQVIA Fox Chase Cancer Center   Cold Spring Harbor Laboratories & Northwell Health Maine Medical Center   Cancer Institute Stanford University School of Medicine  Duke University & bioMerieux  Children's Hospital of Philadelphia/University of  Johns Hopkins Hospital Pennsylvania  Summit Therapeutics  2019 Western Regional Patient Meeting | San Francisco

Patient Support, Education and Collaboration 2019 Western Regional Patient Meeting | San Francisco

Fundraising Last fall about 600 runners joined us with over 35 teams running and walking for a cure! 2019 Western Regional Patient Meeting | San Francisco

2018 Patient-Driven Fundraisers Join Us in Finding a Cure for Isaac, Alameda, CA, Organizer: Yating Wong Fundraising & Networking Event, Toronto, Canada, Organizer: Desmoid Tumour Foundation of Canada 5 th Desmoid Dash, Mendota Heights, MN, Organizers: The Zechmann Family Voorhees Middle School Walk-a-thon, Voorhees, NJ, Organizers: Christina Kosyla Lemonade Stand in Support of DTRF, Burlington, Ontario, Organizer: Jennifer Stubbs Clothing Drive & Chicken Dinner , Lyons, PA, Organizers: Corinne Conrad and Rochelle Miller 10 TH Annual Lap4Life, Newburgh, NY, Organizer: Maddalena Casabianca Reade & Lap4Life Beer, Bags and Boards Fundraiser, Charlotte, NC, Organizer: Char Leeson 3rd Annual JoeStrong Volleyball Tourney, Austin, TX, Organizer: Joe Erickson Halloween Party to Support DTRF , Kearny, NJ, Organizer: Devonne Lap4Life Brewery Fundraiser , Newburgh, NJ, Organizer: Maddalena Casabianca Reade 2018 Tucking for Tumors, Cary, NC, Organizer: Dr. Kelly Mercier AND MORE! 2019 Western Regional Patient Meeting | San Francisco

DTRF Virtual Tumor Board 2019 Western Regional Patient Meeting | San Francisco

DTRF Desmoid Tumor Patient Registry https://dtrf.iamrare.org 2019 Western Regional Patient Meeting | San Francisco

Patient Reported Outcome Tool Collaboration among:  Mrinal Gounder, MD, at Memorial Sloan Kettering Cancer Center  IQVIA, a leader in PRO development  DTRF Patient Community 2019 Western Regional Patient Meeting | San Francisco

International Consensus Paper on Desmoid Tumor Treatment International Consensus Meeting Milan, Italy, 2018 2019 Western Regional Patient Meeting | San Francisco

Promising Clinical Trials  Tegavivint - Iterion Pharmaceuticals - in Phase I  Nirogacestat - SpringWorks Therapeutics - in Phase III  Sorafenib ( Nexavar ) - Phase III “NIH -funded study shows sorafenib improves progression-free survival for patients with desmoid tumors.” Results published in prestigious New England Journal of Medicine in 2019. Additional trials can be found at DTRF.org/clinicaltrials “I’m not a guinea pig, I’m a test pilot.” - Anonymous Clinical Trial Participant 2019 Western Regional Patient Meeting | San Francisco

Thank you to… KEILA TORRES, MD, PhD - MD Anderson Cancer Center DTR TRF Me Medi dical l Adv Advis isory ry Boar Board  AARON WEISS, DO (Chair) - Maine Medical Center CHANDRAJIT RAUT, MD - Harvard Medical School   ROBERT BENJAMIN, MD - MD Anderson Cancer VINOD RAVI, MD - MD Anderson Cancer Center   Center VICTOR VILLALOBOS - University of Colorado-Denver  RASHMI CHUGH, MD - University Of Michigan Health  SYLVIA STACCHIOTTI, MD - Fondazione IRCCS Istituto  System Nazionale Dei Tumori PALMA DILEO, MD - University College London Hospitals  RICK HAAS, MD, PhD - Netherlands Cancer Institute DTRF TRF Sc Scien ientific ific Advis dvisory ry Boar oard  AIMEE CRAGO, MD, PhD (Chair) - Memorial Sloan PETER HOHENBERGER, MD, PhD - University of Heidelberg   Kettering Cancer Center MRINAL GOUNDER, MD - Memorial Sloan Kettering Cancer  BENJAMIN ALMAN, MD - Duke University Center  MRINAL GOUNDER, MD - Memorial Sloan Kettering BERND KASPER, MD, PhD - Mannheim University Medical   Cancer Center Center ALEXANDER LAZAR, MD, PhD - MD Anderson Cancer ROBERT LEFKOWITZ, MD - Memorial Sloan Kettering Cancer   Center Center ROBERT MAKI, MD, PhD - Northshore LIJ, Northwell CHRISTIAN MEYER, MD, PhD - Johns Hopkins Sidney Kimmel   Health Systems Comprehensive Cancer Canter KELLY MERCIER, PhD - Duke University & Inviata Inc. RAPHAEL POLLOCK, MD, PHD - Ohio State University   Comprehensive Cancer Center ROEL NUSSE, PhD - Stanford University School of  Medicine CHANDRAJIT RAUT, MD - Harvard Medical School  JEAN PATY, PhD - IQVIA VINOD RAVI, MD - MD Anderson Cancer Center   MATTHEW VAN DE RIJN, MD, PhD - Stanford University VICTOR VILLALOBOS - University of Colorado-Denver   Medical Center SYLVIA STACCHIOTTI, MD - Fondazione IRCCS Istituto  Nazionale Dei Tumori 2019 Western Regional Patient Meeting | San Francisco

Thank you to…  DTRF Staff  DTRF Volunteers  The Desmoid Tumor Patient Community 2019 Western Regional Patient Meeting | San Francisco

Working together, we will find a cure! 2019 Western Regional Patient Meeting | San Francisco