WELCOME! DTRF Western Regional Patient Meeting South San Francisco, - - PowerPoint PPT Presentation
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
2019 Western Regional Patient Meeting | San Francisco
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
- f 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
Iterion Pharmaceuticals
The Mayo Clinic
SPAEN/ SOS Desmoid
The Broad Institute of Harvard and MIT
Fondazione IRCCS Istituto Tumori Milano
The Desmoid Tumour Foundation of Canada
University College London Hospitals
Rabin Medical Center
Focused Ultrasound Foundation
- Mt. Sinai Hospital, Sinai Health System/Lunenfeld-
Tanenbaum Res. Inst/Sinai Health System
Memorial Sloan Kettering Cancer Center
Virgen Del Rocio University Hospital
Mannheim University Medical Center, University of Heidelberg
Institut Bergonie
Mannheim University Medical Center
IQVIA
Cold Spring Harbor Laboratories & Northwell Health Cancer Institute
Duke University & bioMerieux
Johns Hopkins Hospital
University of Minnesota
Children's Hospital, Los Angeles
Nagoya University Graduate School of Medicine
The Mayo Clinic
The Ohio State University
Stanford University
Sarcoma Alliance for Research Through Collaboration (SARC)
Indiana University
Children’s National Medical Center
Contactgroup Desmoid
Fondazione IRCCS Istituto Nazionale Dei Tumori
SpringWorks Therapeutics
Erasmus Medical Center Cancer Institute
MD Anderson Cancer Center
Contactgroup Desmoid
Duke University
Ghent University
Fox Chase Cancer Center
Maine Medical Center
Stanford University School of Medicine
Children's Hospital of Philadelphia/University of 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 5th 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 10TH 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
- n 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…
DTR TRF Me Medi dical l Adv Advis isory ry Boar Board
AARON WEISS, DO (Chair) - Maine Medical Center
ROBERT BENJAMIN, MD - MD Anderson Cancer Center
RASHMI CHUGH, MD - University Of Michigan Health System
PALMA DILEO, MD - University College London Hospitals
RICK HAAS, MD, PhD - Netherlands Cancer Institute
PETER HOHENBERGER, MD, PhD - University of Heidelberg
MRINAL GOUNDER, MD - Memorial Sloan Kettering Cancer Center
BERND KASPER, MD, PhD - Mannheim University Medical Center
ROBERT LEFKOWITZ, MD - Memorial Sloan Kettering Cancer Center
CHRISTIAN MEYER, MD, PhD - Johns Hopkins Sidney Kimmel Comprehensive Cancer Canter
RAPHAEL POLLOCK, MD, PHD - Ohio State University Comprehensive Cancer Center
CHANDRAJIT RAUT, MD - Harvard Medical School
VINOD RAVI, MD - MD Anderson Cancer Center
VICTOR VILLALOBOS - University of Colorado-Denver
SYLVIA STACCHIOTTI, MD - Fondazione IRCCS Istituto Nazionale Dei Tumori
KEILA TORRES, MD, PhD - MD Anderson Cancer Center
CHANDRAJIT RAUT, MD - Harvard Medical School
VINOD RAVI, MD - MD Anderson Cancer Center
VICTOR VILLALOBOS - University of Colorado-Denver
SYLVIA STACCHIOTTI, MD - Fondazione IRCCS Istituto Nazionale Dei Tumori
DTRF TRF Sc Scien ientific ific Advis dvisory ry Boar
- ard
AIMEE CRAGO, MD, PhD (Chair) - Memorial Sloan Kettering Cancer Center
BENJAMIN ALMAN, MD - Duke University
MRINAL GOUNDER, MD - Memorial Sloan Kettering Cancer Center
ALEXANDER LAZAR, MD, PhD - MD Anderson Cancer Center
ROBERT MAKI, MD, PhD - Northshore LIJ, Northwell Health Systems
KELLY MERCIER, PhD - Duke University & Inviata Inc.
ROEL NUSSE, PhD - Stanford University School of Medicine
JEAN PATY, PhD - IQVIA
MATTHEW VAN DE RIJN, MD, PhD - Stanford University Medical Center
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