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

Copyright 2006 Liddy Shriver Sarcoma Initiative 1

Liddy Shriver Sarcoma Liddy Shriver Sarcoma InitiativeInitiative

2Copyright 2006 Liddy Shriver Sarcoma Initiative

Why Are We Here?Why Are We Here?


Our MissionOur Mission

Undertake Activities that Help People Undertake Activities that Help People Dealing with SarcomaDealing with Sarcoma

Central to this MissionCentral to this Mission Increase Public AwarenessIncrease Public Awareness Educate and InformEducate and Inform Fund Sarcoma ResearchFund Sarcoma Research


Our InitiativesOur Initiatives

Electronic Sarcoma Update Newsletter, Electronic Sarcoma Update Newsletter, ESUNESUN

Research GrantsResearch Grants Team Sarcoma InitiativeTeam Sarcoma Initiative

Team Sarcoma Bike, Run, Walk, Swim, Hike Team Sarcoma Bike, Run, Walk, Swim, Hike EventsEvents

Sarcoma Lecture SeriesSarcoma Lecture Series Useful WebsiteUseful Website

ESUN, Clinical Trials, End of Life Care, Journeys, ESUN, Clinical Trials, End of Life Care, Journeys, Links, etcLinks, etc


ESUNESUN

Bi-monthly, Online PublicationBi-monthly, Online Publication Medical Editorial Advisory BoardMedical Editorial Advisory Board

Karen Albritton, MD Karen Albritton, MD Dana-Farber Cancer Institute Laurence Baker, DOLaurence Baker, DO SARC and SWOGSARC and SWOG Murray Brennan, MDMurray Brennan, MD Memorial Sloan-Kettering Cancer CenterMemorial Sloan-Kettering Cancer Center Mark Gebhardt, MD Mark Gebhardt, MD Beth Israel Deaconess Medical Center Mary Louise Keohan, MD Mary Louise Keohan, MD Memorial Sloan-Kettering Cancer CenterMemorial Sloan-Kettering Cancer Center Crystal Mackall, MD Crystal Mackall, MD National Cancer InstituteNational Cancer Institute Ole Steen Nielsen, MDOle Steen Nielsen, MD University of Aarhus, Denmark University of Aarhus, Denmark R. Lor Randall, MD R. Lor Randall, MD Huntsman Cancer InstituteHuntsman Cancer Institute

Leonard Wexler, MD Leonard Wexler, MD Memorial Sloan Kettering Cancer CenterMemorial Sloan Kettering Cancer Center

Small, Dedicated Volunteer StaffSmall, Dedicated Volunteer Staff


ESUN: Audience and ESUN: Audience and ContentContent

AudienceAudience Patients, Caregivers, and Physicians Patients, Caregivers, and Physicians

(Oncologists and Non-oncologists) (Oncologists and Non-oncologists) Content Content

Feature Articles Dealing with a Specific SarcomaFeature Articles Dealing with a Specific Sarcoma General Topic Articles and Op Ed PiecesGeneral Topic Articles and Op Ed Pieces ““Regular” ColumnsRegular” Columns Updates on Sarcoma Advocacy and Related Updates on Sarcoma Advocacy and Related

OrganizationsOrganizations 2005 iSPAN2005 iSPAN


ESUN CDESUN CD


Articles in the Pipeline IArticles in the Pipeline I Cancer Epidemiology in Older Adolescents and Cancer Epidemiology in Older Adolescents and

Young Adults, Young Adults, Crystal Mackall, NIHCrystal Mackall, NIH

Cytarabine for the Treatment of Ewing Sarcoma, Cytarabine for the Treatment of Ewing Sarcoma, Steven DuBois, MD, Dana-Farber Cancer InstituteSteven DuBois, MD, Dana-Farber Cancer Institute

Targeted Virotherapy for Leiomyosarcoma using Targeted Virotherapy for Leiomyosarcoma using Replication-conditional and Attenuated Herpes Replication-conditional and Attenuated Herpes Simplex Virus, Simplex Virus, Katsuhito Takahashi, MD, PhD, Osaka Katsuhito Takahashi, MD, PhD, Osaka Medical Center for Cancer and Cardiovascular Diseases, Medical Center for Cancer and Cardiovascular Diseases, JapanJapan

The Hereditary Basis of Sarcomas – Biology and The Hereditary Basis of Sarcomas – Biology and Clinical Features, Clinical Features, David Malkin, Research Institute, The David Malkin, Research Institute, The Hospital for Sick Children, Toronto, CanadaHospital for Sick Children, Toronto, Canada


Articles in the Pipeline IIArticles in the Pipeline II The State of the Early Detection and Diagnosis of The State of the Early Detection and Diagnosis of

Sarcomas, Sarcomas, Ernest Conrad, MD, Sarcoma Service, Ernest Conrad, MD, Sarcoma Service, University of WashingtonUniversity of Washington

Novel Approaches to an Old Tumor: Molecular Novel Approaches to an Old Tumor: Molecular Targeting of Ewing's Sarcoma, Targeting of Ewing's Sarcoma, Jeffrey A. Toretsky, Jeffrey A. Toretsky, MD, Lombardi Comprehensive Cancer CenterMD, Lombardi Comprehensive Cancer Center

Leiomyosarcoma of Bone and Soft Tissues, Leiomyosarcoma of Bone and Soft Tissues, Michael Michael Weaver, MD John Abraham, MD, Dana-Farber Brigham and Weaver, MD John Abraham, MD, Dana-Farber Brigham and Women’s Cancer CenterWomen’s Cancer Center

Uterine Leiomysarcoma: an Update. Uterine Leiomysarcoma: an Update. Sutapa Ghosh, Sutapa Ghosh, MD, Tanaz R. Ferzandi, MD, MA, Christopher S. Awtrey, MD, MD, Tanaz R. Ferzandi, MD, MA, Christopher S. Awtrey, MD, Gynecologic Oncology, Mount Auburn Hospital, Cambridge, Gynecologic Oncology, Mount Auburn Hospital, Cambridge, MAMA


Articles in the Pipeline IIIArticles in the Pipeline III

On the Horizon: Gene and Virus Therapies On the Horizon: Gene and Virus Therapies for Sarcomas,for Sarcomas, Timothy P. Cripe, MD, PhD, Timothy P. Cripe, MD, PhD, Cincinnati Children's Hospital Medical CenterCincinnati Children's Hospital Medical Center

GIST,GIST, Chandrajit Raut, MD and George Demetri, Chandrajit Raut, MD and George Demetri, MD, Dana-Farber Cancer InstituteMD, Dana-Farber Cancer Institute

Chronic Health Conditions in Adult Chronic Health Conditions in Adult Survivors of Childhood CancerSurvivors of Childhood Cancer, , Crystal Mackall, Crystal Mackall, MD, NIHMD, NIH

We encourage you to submit an We encourage you to submit an article to ESUN article to ESUN


Hot Off the PressHot Off the Press

Starting in 2007Starting in 2007 A “CTOS Op Ed” column ― in each issue A “CTOS Op Ed” column ― in each issue

one of the board members will address one of the board members will address an important (and potentially an important (and potentially controversial) issue controversial) issue

Denise Reinke will begin a column that Denise Reinke will begin a column that will be called “From a Nurse’s will be called “From a Nurse’s Perspective”Perspective”


Basic Research Seed GrantsBasic Research Seed Grants Results from these “demonstration” or “starter” Results from these “demonstration” or “starter”

grants should provide results that will allow the grants should provide results that will allow the researcher to apply for funding for a larger study researcher to apply for funding for a larger study

We are interested in a wide range of research, e.g.: We are interested in a wide range of research, e.g.: Understanding the molecular biology of sarcomasUnderstanding the molecular biology of sarcomas Studying chromosomal translocations, the oncogenes they Studying chromosomal translocations, the oncogenes they

generate and their role in sarcoma developmentgenerate and their role in sarcoma development Translational studiesTranslational studies Studying vaccines, monoclonal antibodies, and mTOR Studying vaccines, monoclonal antibodies, and mTOR

inhibitorsinhibitors Studying the use of nanotechnology in the diagnosis and Studying the use of nanotechnology in the diagnosis and

treatment of sarcomastreatment of sarcomas Studying radiation-induced sarcomaStudying radiation-induced sarcoma Modeling of the process of metastasesModeling of the process of metastases Exploring the differences in the development of sarcomas in Exploring the differences in the development of sarcomas in

children, adolescents, young adults and adults; and children, adolescents, young adults and adults; and Research directed at the early detection and diagnosis of Research directed at the early detection and diagnosis of

sarcomasarcoma


Research FundingResearch FundingIn 3 Years We HaveIn 3 Years We Have

Raised a little over Raised a little over $300,000$300,000 Kept our overhead between Kept our overhead between 2-2-

4%4% so that so that 96-98%96-98% of these of these funds go directly to sarcoma funds go directly to sarcoma research or familiesresearch or families

Funded 8 grants and will fund 2 Funded 8 grants and will fund 2 more before the end of the yearmore before the end of the year


We have Funded Studies that We have Funded Studies that Involved the Following SarcomasInvolved the Following Sarcomas

Alveolar soft part sarcomaAlveolar soft part sarcoma Clear cell sarcomaClear cell sarcoma ChondrosarcomaChondrosarcoma ChordomaChordoma Desmoplastic round cell tumorDesmoplastic round cell tumor Epithelioid sarcomaEpithelioid sarcoma Ewing’s sarcomaEwing’s sarcoma FibrosarcomaFibrosarcoma Gastrointestinal stromal tumor (GIST) Gastrointestinal stromal tumor (GIST) Leiomyosarcoma Leiomyosarcoma Liposarcoma Liposarcoma MFHMFH Malignant peripheral nerve sheath tumorMalignant peripheral nerve sheath tumor Osteosarcoma Osteosarcoma RhabdomyosarcomaRhabdomyosarcoma Synovial sarcomaSynovial sarcoma

Sarcoma Knows No Borders


Research Studies IResearch Studies I

Grant to fund study of tissue samples in Grant to fund study of tissue samples in conjunction with a Phase II Trial of Dasatinib conjunction with a Phase II Trial of Dasatinib in patients with advanced sarcoma. in patients with advanced sarcoma. SARC SARC Grant, Dr. Scott Schuetze, University of Michigan’s School of Grant, Dr. Scott Schuetze, University of Michigan’s School of MedicineMedicine

Study to explore the precise mode of action Study to explore the precise mode of action of Imatinib. of Imatinib. Dr. Sebastian Bauer at the West German Dr. Sebastian Bauer at the West German Cancer Center in Essen and separately Dr. Anette Duensing Cancer Center in Essen and separately Dr. Anette Duensing at the University Of Pittsburgh Cancer Instituteat the University Of Pittsburgh Cancer Institute

A vaccine study for clear cell sarcoma A vaccine study for clear cell sarcoma (CCS), alveolar soft part sarcoma (ASPS), (CCS), alveolar soft part sarcoma (ASPS), and pediatric melanoma. and pediatric melanoma. Dr. John Goldberg and Dr. Dr. John Goldberg and Dr. David Fisher, Dana-Farber Cancer InstituteDavid Fisher, Dana-Farber Cancer Institute


Research Studies IIResearch Studies II

A pilot study of tumor lysate-pulsed A pilot study of tumor lysate-pulsed dendritic cell vaccine for immune dendritic cell vaccine for immune augmentation for high-risk solid tumor augmentation for high-risk solid tumor patients following autologous stem cell patients following autologous stem cell transplantation.transplantation. Jointly funded with the Brian Morden Jointly funded with the Brian Morden Foundation, Dr. James Geiger, Dr. John Levine and Dr. Foundation, Dr. James Geiger, Dr. John Levine and Dr. Raymond Hutchinson, University of Michigan Comprehensive Raymond Hutchinson, University of Michigan Comprehensive Cancer CenterCancer Center

DNA microarray gene analysis. DNA microarray gene analysis. SFA Grant Dr. SFA Grant Dr. Matt van de Rijn, Stanford UniversityMatt van de Rijn, Stanford University

Gene fusions in rhabdomyosarcoma. Gene fusions in rhabdomyosarcoma. SFA SFA Grant Dr. Fredrick Barr, University of PennsylvaniaGrant Dr. Fredrick Barr, University of Pennsylvania


Research Studies IIIResearch Studies III

Gene mutations in osteosarcoma.Gene mutations in osteosarcoma. SFA Grant SFA Grant Dr. Lisa Wang, Baylor College of MedicineDr. Lisa Wang, Baylor College of Medicine

Sarcoma studies.Sarcoma studies. Dr. Mary Louise Keohan, Herbert Dr. Mary Louise Keohan, Herbert Irving Comprehensive Cancer Center at Columbia University Irving Comprehensive Cancer Center at Columbia University (now at MSKCC)(now at MSKCC)

We encourage you to submit a We encourage you to submit a Research ProposalResearch Proposal


Team Sarcoma Initiatives ITeam Sarcoma Initiatives I

Team Sarcoma Bike, Run, Walk, Team Sarcoma Bike, Run, Walk, Swim, Hike EventsSwim, Hike Events A Set of Internationally Coordinated A Set of Internationally Coordinated

Events that Take Place During the Same Events that Take Place During the Same Week in JulyWeek in July

Increase Public Awareness of Sarcoma Increase Public Awareness of Sarcoma by Press and Media Coverage by Press and Media Coverage

Raise Funds for Sarcoma ResearchRaise Funds for Sarcoma Research


Team Sarcoma Initiatives IITeam Sarcoma Initiatives II

““Core” Team Sarcoma Plus a Large Core” Team Sarcoma Plus a Large Number of Virtual (Local) Team Number of Virtual (Local) Team SarcomasSarcomas Sarcoma Centers, Sarcoma Advocacy Sarcoma Centers, Sarcoma Advocacy

Groups, Patients, Caregivers, Survivors, Groups, Patients, Caregivers, Survivors, Friends and FamilyFriends and Family

Denmark, Germany, Hong Kong, India, Denmark, Germany, Hong Kong, India, Ireland, Israel, Japan, Norway, Poland, Ireland, Israel, Japan, Norway, Poland, Portugal, Serbia, Slovenia, Sweden, Portugal, Serbia, Slovenia, Sweden, Ukraine, the USA (teams in over 15 Ukraine, the USA (teams in over 15 states)states)


Team Sarcoma 2007 Team Sarcoma 2007 InitiativeInitiative

50 Cyclists + Day Riders Forming the 50 Cyclists + Day Riders Forming the “Core” Team Sarcoma in Vermont “Core” Team Sarcoma in Vermont during 14-20 July 2007during 14-20 July 2007

1,000+ people in “Local Team 1,000+ people in “Local Team Sarcomas” in Various Countries Sarcomas” in Various Countries Around the Globe during 14-22 July Around the Globe during 14-22 July 20072007

Sarcoma Lecture Series in June 2007Sarcoma Lecture Series in June 2007


ClosureClosure

Questions ?Questions ?


Team Sarcoma 2006Team Sarcoma 200650 People Biked the Danish Islands50 People Biked the Danish Islands

July 1-7, 2006July 1-7, 2006


Team SarcomaTeam SarcomaDana-Farber Cancer InstituteDana-Farber Cancer Institute

34 People Ran 5K/10K in Quincy, MA34 People Ran 5K/10K in Quincy, MA


Team SarcomaTeam SarcomaFox Chase Cancer CenterFox Chase Cancer Center

25 People walked the FCCC Campus25 People walked the FCCC Campus


Team SarcomaTeam SarcomaWest German Cancer InstituteWest German Cancer Institute

30 People Biked 30 KM30 People Biked 30 KM


Team SarcomaTeam SarcomaH. L. Moffitt Cancer CenterH. L. Moffitt Cancer Center100100 People did a Sunset Stroll People did a Sunset Stroll


Team SarcomaTeam SarcomaHuntsman Cancer InstituteHuntsman Cancer Institute

60 People Hiked in Utah60 People Hiked in Utah


Team SarcomaTeam SarcomaHong KongHong Kong



Team SarcomaTeam SarcomaPortugalPortugal



Team SarcomaTeam SarcomaSarcoma AllianceSarcoma Alliance

17 People Ran 20 KM at 580 M17 People Ran 20 KM at 580 M(12 miles at 1,900 ft)(12 miles at 1,900 ft)


Team SarcomaTeam SarcomaDesmoid Tumor Research FoundationDesmoid Tumor Research Foundation

10 People Hiked Masada in Israel10 People Hiked Masada in Israel


Team Sarcoma/SwedenTeam Sarcoma/Sweden1 man, Magnus Johannson, biked 300 KM (188 miles) in 1 man, Magnus Johannson, biked 300 KM (188 miles) in

11 Hrs11 Hrs


Sarcoma Knows No BordersSarcoma Knows No Borders

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

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Transcript of Copyright 2006 Liddy Shriver Sarcoma Initiative 1 Liddy Shriver Sarcoma Initiative.