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Liddy Shriver Sarcoma Initiative
Copyright 2006 Liddy Shriver Sarcoma Initiative
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Why Are We Here?
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Our Mission
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Undertake Activities that Help People
Dealing with Sarcoma
Central to this Mission
Increase Public Awareness
 Educate and Inform
 Fund Sarcoma Research
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Our Initiatives
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Electronic Sarcoma Update Newsletter,
ESUN
Research Grants
Team Sarcoma Initiative
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Team Sarcoma Bike, Run, Walk, Swim, Hike Events
Sarcoma Lecture Series
Useful Website
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ESUN, Clinical Trials, End of Life Care, Journeys,
Links, etc
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ESUN
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Bi-monthly, Online Publication
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Medical Editorial Advisory Board
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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
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ESUN: Audience and Content
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Audience
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Patients, Caregivers, and Physicians (Oncologists
and Non-oncologists)
Content
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Feature Articles Dealing with a Specific Sarcoma
General Topic Articles and Op Ed Pieces
“Regular” Columns
Updates on Sarcoma Advocacy and Related
Organizations
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2005 iSPAN
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ESUN CD
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Articles in the Pipeline I
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Cancer Epidemiology in Older Adolescents and Young
Adults, Crystal Mackall, NIH
Cytarabine for the Treatment of Ewing Sarcoma,
Steven DuBois, MD, Dana-Farber Cancer Institute
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Targeted Virotherapy for Leiomyosarcoma using
Replication-conditional and Attenuated Herpes
Simplex Virus, Katsuhito Takahashi, MD, PhD, Osaka Medical
Center for Cancer and Cardiovascular Diseases, Japan
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The Hereditary Basis of Sarcomas – Biology and
Clinical Features, David Malkin, Research Institute, The
Hospital for Sick Children, Toronto, Canada
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Articles in the Pipeline II
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The State of the Early Detection and Diagnosis of
Sarcomas, Ernest Conrad, MD, Sarcoma Service, University of
Washington
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Novel Approaches to an Old Tumor: Molecular
Targeting of Ewing's Sarcoma, Jeffrey A. Toretsky, MD,
Lombardi Comprehensive Cancer Center
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Leiomyosarcoma of Bone and Soft Tissues, Michael
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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
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Articles in the Pipeline III
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On the Horizon: Gene and Virus Therapies for
Sarcomas, Timothy P. Cripe, MD, PhD, Cincinnati
Children's Hospital Medical Center
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GIST, Chandrajit Raut, MD and George Demetri,
MD, Dana-Farber Cancer Institute
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Chronic Health Conditions in Adult Survivors
of Childhood Cancer, Crystal Mackall, MD, NIH
We encourage you to submit an article
to ESUN
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Hot Off the Press
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Starting in 2007
A “CTOS Op Ed” column ― in each issue one
of the board members will address an
important (and potentially controversial)
issue
 Denise Reinke will begin a column that will
be called “From a Nurse’s Perspective”
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Basic Research Seed Grants
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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.:
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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 mTOR 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
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Research Funding
In 3 Years We Have
Raised a little over $300,000
 Kept our overhead between 2-4%
so that 96-98% of these funds go
directly to sarcoma research or
families
 Funded 8 grants and will fund 2
more before the end of the year
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We have Funded Studies that
Involved the Following Sarcomas
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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
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Research Studies I
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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
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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
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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
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Research Studies II
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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
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DNA microarray gene analysis.
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Gene fusions in rhabdomyosarcoma.
van de Rijn, Stanford University
Fredrick Barr, University of Pennsylvania
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SFA Grant Dr. Matt
SFA Grant Dr.
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Research Studies III
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Gene mutations in osteosarcoma.
Lisa Wang, Baylor College of Medicine
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SFA Grant Dr.
Sarcoma studies.
Dr. Mary Louise Keohan, Herbert Irving
Comprehensive Cancer Center at Columbia University (now at
MSKCC)
We encourage you to submit a Research
Proposal
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Team Sarcoma Initiatives I
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Team Sarcoma Bike, Run, Walk, Swim,
Hike Events
A Set of Internationally Coordinated
Events that Take Place During the Same
Week in July
 Increase Public Awareness of Sarcoma by
Press and Media Coverage
 Raise Funds for Sarcoma Research
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Team Sarcoma Initiatives II
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“Core” Team Sarcoma Plus a Large
Number of Virtual (Local) Team
Sarcomas
Sarcoma Centers, Sarcoma Advocacy
Groups, Patients, Caregivers, Survivors,
Friends and Family
 Denmark, Germany, Hong Kong, India,
Ireland, Israel, Japan, Norway, Poland,
Portugal, Serbia, Slovenia, Sweden,
Ukraine, the USA (teams in over 15 states)
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Team Sarcoma 2007 Initiative
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50 Cyclists + Day Riders Forming the
“Core” Team Sarcoma in Vermont during
14-20 July 2007
1,000+ people in “Local Team Sarcomas”
in Various Countries Around the Globe
during 14-22 July 2007
Sarcoma Lecture Series in June 2007
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Closure
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Questions ?
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Team Sarcoma 2006
50 People Biked the Danish Islands
July 1-7, 2006
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Team Sarcoma
Dana-Farber Cancer Institute
34 People Ran 5K/10K in Quincy, MA
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Team Sarcoma
Fox Chase Cancer Center
25 People walked the FCCC Campus
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Team Sarcoma
West German Cancer Institute
30 People Biked 30 KM
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Team Sarcoma
H. L. Moffitt Cancer Center
100 People did a Sunset Stroll
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Team Sarcoma
Huntsman Cancer Institute
60 People Hiked in Utah
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Team Sarcoma
Hong Kong
29 People Biked 50 KM
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Team Sarcoma
Portugal
20 People Biked 10 KM
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Team Sarcoma
Sarcoma Alliance
17 People Ran 20 KM at 580 M
(12 miles at 1,900 ft)
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Team Sarcoma
Desmoid Tumor Research Foundation
10 People Hiked Masada in Israel
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Team Sarcoma/Sweden
1 man, Magnus Johannson, biked 300 KM (188 miles) in 11 Hrs
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Sarcoma Knows No Borders
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