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Liddy Shriver Sarcoma Initiative Copyright 2006 Liddy Shriver Sarcoma Initiative 1 Liddy Shriver Sarcoma Initiative Copyright 2006 Liddy Shriver Sarcoma Initiative 1

Why Are We Here? Copyright 2006 Liddy Shriver Sarcoma Initiative 2 Why Are We Here? Copyright 2006 Liddy Shriver Sarcoma Initiative 2

Our Mission Undertake Activities that Help People Dealing with Sarcoma n Central to this Our Mission Undertake Activities that Help People Dealing with Sarcoma n Central to this Mission n Increase Public Awareness n Educate and Inform n Fund Sarcoma Research n Copyright 2006 Liddy Shriver Sarcoma Initiative 3

Our Initiatives n n n Electronic Sarcoma Update Newsletter, ESUN Research Grants Team Sarcoma Our Initiatives n n n Electronic Sarcoma Update Newsletter, ESUN Research Grants Team Sarcoma Initiative n n n Team Sarcoma Bike, Run, Walk, Swim, Hike Events Sarcoma Lecture Series Useful Website n ESUN, Clinical Trials, End of Life Care, Journeys, Links, etc Copyright 2006 Liddy Shriver Sarcoma Initiative 4

ESUN n Bi-monthly, Online Publication n Medical Editorial Advisory Board n n n n ESUN n Bi-monthly, Online Publication n Medical Editorial Advisory Board n n n n n Karen Albritton, MD Dana-Farber Cancer Institute Laurence Baker, DO SARC and SWOG Murray Brennan, MD Memorial Sloan-Kettering Cancer Center Mark Gebhardt, MD Beth Israel Deaconess Medical Center Mary Louise Keohan, MD Memorial Sloan-Kettering Cancer Center Crystal Mackall, MD National Cancer Institute Ole Steen Nielsen, MD University of Aarhus, Denmark R. Lor Randall, MD Huntsman Cancer Institute Leonard Wexler, MD Memorial Sloan Kettering Cancer Center Small, Dedicated Volunteer Staff Copyright 2006 Liddy Shriver Sarcoma Initiative 5

ESUN: Audience and Content n Audience n n Patients, Caregivers, and Physicians (Oncologists and ESUN: Audience and Content n Audience n n Patients, Caregivers, and Physicians (Oncologists and Non-oncologists) Content n n Feature Articles Dealing with a Specific Sarcoma General Topic Articles and Op Ed Pieces “Regular” Columns Updates on Sarcoma Advocacy and Related Organizations n 2005 i. SPAN Copyright 2006 Liddy Shriver Sarcoma Initiative 6

ESUN CD Copyright 2006 Liddy Shriver Sarcoma Initiative 7 ESUN CD Copyright 2006 Liddy Shriver Sarcoma Initiative 7

Articles in the Pipeline I n n Cancer Epidemiology in Older Adolescents and Young Articles in the Pipeline I n n Cancer Epidemiology in Older Adolescents and Young Adults, Crystal Mackall, NIH Cytarabine for the Treatment of Ewing Sarcoma, Steven Du. Bois, MD, Dana-Farber Cancer Institute n Targeted Virotherapy for Leiomyosarcoma using Replication-conditional and Attenuated Herpes Simplex Virus, Katsuhito Takahashi, MD, Ph. D, Osaka Medical Center for Cancer and Cardiovascular Diseases, Japan n The Hereditary Basis of Sarcomas – Biology and Clinical Features, David Malkin, Research Institute, The Hospital for Sick Children, Toronto, Canada Copyright 2006 Liddy Shriver Sarcoma Initiative 8

Articles in the Pipeline II n The State of the Early Detection and Diagnosis Articles in the Pipeline II n The State of the Early Detection and Diagnosis of Sarcomas, Ernest Conrad, MD, Sarcoma Service, University of Washington n Novel Approaches to an Old Tumor: Molecular Targeting of Ewing's Sarcoma, Jeffrey A. Toretsky, MD, Lombardi Comprehensive Cancer Center n Leiomyosarcoma of Bone and Soft Tissues, Michael n Uterine Leiomysarcoma: an Update. Sutapa Ghosh, MD, Weaver, MD John Abraham, MD, Dana-Farber Brigham and Women’s Cancer Center Tanaz R. Ferzandi, MD, MA, Christopher S. Awtrey, MD, Gynecologic Oncology, Mount Auburn Hospital, Cambridge, MA Copyright 2006 Liddy Shriver Sarcoma Initiative 9

Articles in the Pipeline III n On the Horizon: Gene and Virus Therapies for Articles in the Pipeline III n On the Horizon: Gene and Virus Therapies for Sarcomas, Timothy P. Cripe, MD, Ph. D, Cincinnati Children's Hospital Medical Center n n GIST, Chandrajit Raut, MD and George Demetri, MD, Dana-Farber Cancer Institute Chronic Health Conditions in Adult Survivors of Childhood Cancer, Crystal Mackall, MD, NIH We encourage you to submit an article to ESUN Copyright 2006 Liddy Shriver Sarcoma Initiative 10

Hot Off the Press n Starting in 2007 A “CTOS Op Ed” column ― Hot Off the Press n Starting in 2007 A “CTOS Op Ed” column ― in each issue one of the board members will address an important (and potentially controversial) issue n Denise Reinke will begin a column that will be called “From a Nurse’s Perspective” n Copyright 2006 Liddy Shriver Sarcoma Initiative 11

Basic Research Seed Grants n n Results from these “demonstration” or “starter” grants should Basic Research Seed Grants n n Results from these “demonstration” or “starter” grants should provide results that will allow the researcher to apply for funding for a larger study We are interested in a wide range of research, e. g. : n n n n n Understanding the molecular biology of sarcomas Studying chromosomal translocations, the oncogenes they generate and their role in sarcoma development Translational studies Studying vaccines, monoclonal antibodies, and m. TOR inhibitors Studying the use of nanotechnology in the diagnosis and treatment of sarcomas Studying radiation-induced sarcoma Modeling of the process of metastases Exploring the differences in the development of sarcomas in children, adolescents, young adults and adults; and Research directed at the early detection and diagnosis of sarcoma Copyright 2006 Liddy Shriver Sarcoma Initiative 12

Research Funding In 3 Years We Have n Raised a little over $300, 000 Research Funding In 3 Years We Have n Raised a little over $300, 000 n Kept our overhead between 2 -4% so that 96 -98% of these funds go directly to sarcoma research or families n Funded 8 grants and will fund 2 more before the end of the year Copyright 2006 Liddy Shriver Sarcoma Initiative 13

We have Funded Studies that Involved the Following Sarcomas n n n n Alveolar We have Funded Studies that Involved the Following Sarcomas n n n n Alveolar soft part sarcoma Clear cell sarcoma Chondrosarcoma Chordoma Desmoplastic round cell tumor Epithelioid sarcoma Ewing’s sarcoma Fibrosarcoma Gastrointestinal stromal tumor (GIST) Leiomyosarcoma Liposarcoma MFH Malignant peripheral nerve sheath tumor Osteosarcoma Rhabdomyosarcoma Synovial sarcoma Sarcoma Knows No Borders Copyright 2006 Liddy Shriver Sarcoma Initiative 14

Research Studies I n Grant to fund study of tissue samples in conjunction with Research Studies I n Grant to fund study of tissue samples in conjunction with a Phase II Trial of Dasatinib in patients with advanced sarcoma. SARC Grant, Dr. Scott Schuetze, University of Michigan’s School of Medicine n Study to explore the precise mode of action of Imatinib. Dr. Sebastian Bauer at the West German Cancer Center in Essen and separately Dr. Anette Duensing at the University Of Pittsburgh Cancer Institute n A vaccine study for clear cell sarcoma (CCS), alveolar soft part sarcoma (ASPS), and pediatric melanoma. Dr. John Goldberg and Dr. David Fisher, Dana-Farber Cancer Institute Copyright 2006 Liddy Shriver Sarcoma Initiative 15

Research Studies II n A pilot study of tumor lysate-pulsed dendritic cell vaccine for Research Studies II n A pilot study of tumor lysate-pulsed dendritic cell vaccine for immune augmentation for high -risk solid tumor patients following autologous stem cell transplantation. Jointly funded with the Brian Morden Foundation, Dr. James Geiger, Dr. John Levine and Dr. Raymond Hutchinson, University of Michigan Comprehensive Cancer Center n DNA microarray gene analysis. SFA Grant Dr. Matt n Gene fusions in rhabdomyosarcoma. SFA Grant Dr. van de Rijn, Stanford University Fredrick Barr, University of Pennsylvania Copyright 2006 Liddy Shriver Sarcoma Initiative 16

Research Studies III n Gene mutations in osteosarcoma. n Sarcoma studies. Lisa Wang, Baylor Research Studies III n Gene mutations in osteosarcoma. n Sarcoma studies. Lisa Wang, Baylor College of Medicine SFA Grant Dr. Mary Louise Keohan, Herbert Irving Comprehensive Cancer Center at Columbia University (now at MSKCC) We encourage you to submit a Research Proposal Copyright 2006 Liddy Shriver Sarcoma Initiative 17

Team Sarcoma Initiatives I n Team Sarcoma Bike, Run, Walk, Swim, Hike Events A Team Sarcoma Initiatives I n Team Sarcoma Bike, Run, Walk, Swim, Hike Events A Set of Internationally Coordinated Events that Take Place During the Same Week in July n Increase Public Awareness of Sarcoma by Press and Media Coverage n Raise Funds for Sarcoma Research n Copyright 2006 Liddy Shriver Sarcoma Initiative 18

Team Sarcoma Initiatives II n “Core” Team Sarcoma Plus a Large Number of Virtual Team Sarcoma Initiatives II n “Core” Team Sarcoma Plus a Large Number of Virtual (Local) Team Sarcomas Sarcoma Centers, Sarcoma Advocacy Groups, Patients, Caregivers, Survivors, Friends and Family n Denmark, Germany, Hong Kong, India, Ireland, Israel, Japan, Norway, Poland, Portugal, Serbia, Slovenia, Sweden, Ukraine, the USA (teams in over 15 states) n Copyright 2006 Liddy Shriver Sarcoma Initiative 19

Team Sarcoma 2007 Initiative 50 Cyclists + Day Riders Forming the “Core” Team Sarcoma Team Sarcoma 2007 Initiative 50 Cyclists + Day Riders Forming the “Core” Team Sarcoma in Vermont during 14 -20 July 2007 n 1, 000+ people in “Local Team Sarcomas” in Various Countries Around the Globe during 14 -22 July 2007 n Sarcoma Lecture Series in June 2007 n Copyright 2006 Liddy Shriver Sarcoma Initiative 20

Closure n Questions ? Copyright 2006 Liddy Shriver Sarcoma Initiative 21 Closure n Questions ? Copyright 2006 Liddy Shriver Sarcoma Initiative 21

Team Sarcoma 2006 50 People Biked the Danish Islands July 1 -7, 2006 Copyright Team Sarcoma 2006 50 People Biked the Danish Islands July 1 -7, 2006 Copyright 2006 Liddy Shriver Sarcoma Initiative 22

Team Sarcoma Dana-Farber Cancer Institute 34 People Ran 5 K/10 K in Quincy, MA Team Sarcoma Dana-Farber Cancer Institute 34 People Ran 5 K/10 K in Quincy, MA Copyright 2006 Liddy Shriver Sarcoma Initiative 23

Team Sarcoma Fox Chase Cancer Center 25 People walked the FCCC Campus Copyright 2006 Team Sarcoma Fox Chase Cancer Center 25 People walked the FCCC Campus Copyright 2006 Liddy Shriver Sarcoma Initiative 24

Team Sarcoma West German Cancer Institute 30 People Biked 30 KM Copyright 2006 Liddy Team Sarcoma West German Cancer Institute 30 People Biked 30 KM Copyright 2006 Liddy Shriver Sarcoma Initiative 25

Team Sarcoma H. L. Moffitt Cancer Center 100 People did a Sunset Stroll Copyright Team Sarcoma H. L. Moffitt Cancer Center 100 People did a Sunset Stroll Copyright 2006 Liddy Shriver Sarcoma Initiative 26

Team Sarcoma Huntsman Cancer Institute 60 People Hiked in Utah Copyright 2006 Liddy Shriver Team Sarcoma Huntsman Cancer Institute 60 People Hiked in Utah Copyright 2006 Liddy Shriver Sarcoma Initiative 27

Team Sarcoma Hong Kong 29 People Biked 50 KM Copyright 2006 Liddy Shriver Sarcoma Team Sarcoma Hong Kong 29 People Biked 50 KM Copyright 2006 Liddy Shriver Sarcoma Initiative 28

Team Sarcoma Portugal 20 People Biked 10 KM Copyright 2006 Liddy Shriver Sarcoma Initiative Team Sarcoma Portugal 20 People Biked 10 KM Copyright 2006 Liddy Shriver Sarcoma Initiative 29

Team Sarcoma Alliance 17 People Ran 20 KM at 580 M (12 miles at Team Sarcoma Alliance 17 People Ran 20 KM at 580 M (12 miles at 1, 900 ft) Copyright 2006 Liddy Shriver Sarcoma Initiative 30

Team Sarcoma Desmoid Tumor Research Foundation 10 People Hiked Masada in Israel Copyright 2006 Team Sarcoma Desmoid Tumor Research Foundation 10 People Hiked Masada in Israel Copyright 2006 Liddy Shriver Sarcoma Initiative 31

Team Sarcoma/Sweden 1 man, Magnus Johannson, biked 300 KM (188 miles) in 11 Hrs Team Sarcoma/Sweden 1 man, Magnus Johannson, biked 300 KM (188 miles) in 11 Hrs Copyright 2006 Liddy Shriver Sarcoma Initiative 32

Sarcoma Knows No Borders Copyright 2006 Liddy Shriver Sarcoma Initiative 33 Sarcoma Knows No Borders Copyright 2006 Liddy Shriver Sarcoma Initiative 33