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

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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


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

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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.
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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

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2019 Western Regional Patient Meeting | San Francisco

DTRF International Desmoid Tumor Research Workshop

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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

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2019 Western Regional Patient Meeting | San Francisco

Patient Support, Education and Collaboration

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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!

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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!

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2019 Western Regional Patient Meeting | San Francisco

DTRF Virtual Tumor Board

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2019 Western Regional Patient Meeting | San Francisco

DTRF Desmoid Tumor Patient Registry

https://dtrf.iamrare.org

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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

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2019 Western Regional Patient Meeting | San Francisco

International Consensus Paper

  • n Desmoid Tumor Treatment

International Consensus Meeting Milan, Italy, 2018

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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
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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

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2019 Western Regional Patient Meeting | San Francisco

Thank you to…

 DTRF Staff  DTRF Volunteers  The Desmoid Tumor Patient Community

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2019 Western Regional Patient Meeting | San Francisco

Working together, we will find a cure!