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Advocacy SessionAdvocacy Session

Sarcoma Research Funding by the Nonprofit SectorSarcoma Research Funding by the Nonprofit Sector Advocacy SessionAdvocacy Session

Sarcoma Research Funding by the Nonprofit SectorSarcoma Research Funding by the Nonprofit Sector

Jody Cummings, MPHJody Cummings, MPH

Executive DirectorExecutive Director

Jody Cummings, MPHJody Cummings, MPH

Executive DirectorExecutive Director

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Sarcoma Foundation of America - Sarcoma Foundation of America - MissionMission

Sarcoma Foundation of America - Sarcoma Foundation of America - MissionMission

Our mission is to act as an Our mission is to act as an advocate for sarcoma advocate for sarcoma medical researchmedical research AND AND provide funding to provide funding to support researchsupport research focused on discovering and focused on discovering and developing new weapons with which to treat developing new weapons with which to treat and eradicate sarcomaand eradicate sarcoma

Our mission is to act as an Our mission is to act as an advocate for sarcoma advocate for sarcoma medical researchmedical research AND AND provide funding to provide funding to support researchsupport research focused on discovering and focused on discovering and developing new weapons with which to treat developing new weapons with which to treat and eradicate sarcomaand eradicate sarcoma

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To achieve our mission, the SFA, will To achieve our mission, the SFA, will focus on the following three goals:focus on the following three goals:

To achieve our mission, the SFA, will To achieve our mission, the SFA, will focus on the following three goals:focus on the following three goals:

Funding of research grants through our internal Funding of research grants through our internal mechanism as well as by giving financial mechanism as well as by giving financial support to outside foundations, such as ASCO support to outside foundations, such as ASCO and AACR. and AACR.

Grassroots Awareness and Education Grassroots Awareness and Education CampaignsCampaigns

Research AdvocacyResearch Advocacy

Funding of research grants through our internal Funding of research grants through our internal mechanism as well as by giving financial mechanism as well as by giving financial support to outside foundations, such as ASCO support to outside foundations, such as ASCO and AACR. and AACR.

Grassroots Awareness and Education Grassroots Awareness and Education CampaignsCampaigns

Research AdvocacyResearch Advocacy

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The SFA will achieve its goals by:The SFA will achieve its goals by:The SFA will achieve its goals by:The SFA will achieve its goals by:

Continuing to fund state of the art Continuing to fund state of the art sarcoma researchsarcoma research

Creating a critical mass of sarcoma Creating a critical mass of sarcoma patients and caregiverspatients and caregivers

By convincing state and federal legislators By convincing state and federal legislators to pay attention to sarcomato pay attention to sarcoma

Continuing to fund state of the art Continuing to fund state of the art sarcoma researchsarcoma research

Creating a critical mass of sarcoma Creating a critical mass of sarcoma patients and caregiverspatients and caregivers

By convincing state and federal legislators By convincing state and federal legislators to pay attention to sarcomato pay attention to sarcoma

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Call for Grant ProposalsCall for Grant ProposalsCall for Grant ProposalsCall for Grant Proposals A call for grant proposals is currently activeA call for grant proposals is currently active Deadline for applications is January 31, 2005Deadline for applications is January 31, 2005 For this funding cycle, grant amounts will be a For this funding cycle, grant amounts will be a

maximum of $25,000maximum of $25,000 For more information visit our site at For more information visit our site at www.www.

curesarcomacuresarcoma.org.org The SFA is also funding a Young Investigator The SFA is also funding a Young Investigator

Award through ASCO.Award through ASCO.

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Medical Advisory BoardMedical Advisory BoardMedical Advisory BoardMedical Advisory Board

Murray Brennan, M.D.Murray Brennan, M.D. Larry Baker, D.O.Larry Baker, D.O. Charles Forscher, M.D.Charles Forscher, M.D. Lee Helman, M.D.Lee Helman, M.D. Jonathan Lewis, M.D.Jonathan Lewis, M.D. Alberto Pappo, M.D.Alberto Pappo, M.D. Vernon Sondak, M.D. Vernon Sondak, M.D.

Murray Brennan, M.D.Murray Brennan, M.D. Larry Baker, D.O.Larry Baker, D.O. Charles Forscher, M.D.Charles Forscher, M.D. Lee Helman, M.D.Lee Helman, M.D. Jonathan Lewis, M.D.Jonathan Lewis, M.D. Alberto Pappo, M.D.Alberto Pappo, M.D. Vernon Sondak, M.D. Vernon Sondak, M.D.

George Demetri, M.D.George Demetri, M.D. Bob Benjamin, M.D.Bob Benjamin, M.D. Richard Gorlick, M.D.Richard Gorlick, M.D. Marc Ladanyi, M.D.Marc Ladanyi, M.D. Robert Maki, M.D., Ph.D.Robert Maki, M.D., Ph.D. Peter Pisters, M.D.Peter Pisters, M.D.

George Demetri, M.D.George Demetri, M.D. Bob Benjamin, M.D.Bob Benjamin, M.D. Richard Gorlick, M.D.Richard Gorlick, M.D. Marc Ladanyi, M.D.Marc Ladanyi, M.D. Robert Maki, M.D., Ph.D.Robert Maki, M.D., Ph.D. Peter Pisters, M.D.Peter Pisters, M.D.

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2004 Research Grants2004 Research Grants2004 Research Grants2004 Research Grants Sarcoma Cell Line Resource with Molecular and Sarcoma Cell Line Resource with Molecular and

Kinase Annotation – Jonathan Fletcher, MDKinase Annotation – Jonathan Fletcher, MD Molecular Classification of Sarcoma Cell Lines – Molecular Classification of Sarcoma Cell Lines –

Matt van de Rijn, MD, PhDMatt van de Rijn, MD, PhD Molecular Dissection of a Subset of Gene Molecular Dissection of a Subset of Gene

Fusion-Associated Sarcomas that Lack that Lack Fusion-Associated Sarcomas that Lack that Lack the Gene Fusion – Frederic Barr, MDthe Gene Fusion – Frederic Barr, MD

The Role of RECQ Helicases in the Pathogenesis The Role of RECQ Helicases in the Pathogenesis of Osteosarcoma – Lisa Wang, MDof Osteosarcoma – Lisa Wang, MD

Sarcoma Cell Line Resource with Molecular and Sarcoma Cell Line Resource with Molecular and Kinase Annotation – Jonathan Fletcher, MDKinase Annotation – Jonathan Fletcher, MD

Molecular Classification of Sarcoma Cell Lines – Molecular Classification of Sarcoma Cell Lines – Matt van de Rijn, MD, PhDMatt van de Rijn, MD, PhD

Molecular Dissection of a Subset of Gene Molecular Dissection of a Subset of Gene Fusion-Associated Sarcomas that Lack that Lack Fusion-Associated Sarcomas that Lack that Lack the Gene Fusion – Frederic Barr, MDthe Gene Fusion – Frederic Barr, MD

The Role of RECQ Helicases in the Pathogenesis The Role of RECQ Helicases in the Pathogenesis of Osteosarcoma – Lisa Wang, MDof Osteosarcoma – Lisa Wang, MD

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Critical MassCritical MassCritical MassCritical Mass

Mobilizing our membership to get others Mobilizing our membership to get others involved in the causeinvolved in the cause

Outreach to all medical institutions to educate Outreach to all medical institutions to educate and expand sarcoma community reachand expand sarcoma community reach

Public relations campaign Public relations campaign Grassroots fundraisersGrassroots fundraisers

Mobilizing our membership to get others Mobilizing our membership to get others involved in the causeinvolved in the cause

Outreach to all medical institutions to educate Outreach to all medical institutions to educate and expand sarcoma community reachand expand sarcoma community reach

Public relations campaign Public relations campaign Grassroots fundraisersGrassroots fundraisers

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Sarcoma Foundation of America Sarcoma Foundation of America Research AdvocacyResearch Advocacy

Sarcoma Foundation of America Sarcoma Foundation of America Research AdvocacyResearch Advocacy

Mobilization of our constituents to write, call, Mobilization of our constituents to write, call, fax, and email their representatives in fax, and email their representatives in governmentgovernment

Creation of strategic alliances within DC to Creation of strategic alliances within DC to increase funding for sarcoma researchincrease funding for sarcoma research

Focus on establishing a united, strong, and vocal Focus on establishing a united, strong, and vocal sarcoma community sarcoma community

Mobilization of our constituents to write, call, Mobilization of our constituents to write, call, fax, and email their representatives in fax, and email their representatives in governmentgovernment

Creation of strategic alliances within DC to Creation of strategic alliances within DC to increase funding for sarcoma researchincrease funding for sarcoma research

Focus on establishing a united, strong, and vocal Focus on establishing a united, strong, and vocal sarcoma community sarcoma community

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SFA - MembershipSFA - MembershipSFA - MembershipSFA - Membership

01002003004005006007008009001000

2002 2003 2004

Members

01002003004005006007008009001000

2002 2003 2004

Members

1111

SFA - DatabaseSFA - DatabaseSFA - DatabaseSFA - Database

010002000300040005000600070008000900010000

2002 2003 2004 2005

2002

2003

2004

2005

010002000300040005000600070008000900010000

2002 2003 2004 2005

2002

2003

2004

2005

1212

SFA Website Hits Per DaySFA Website Hits Per DaySFA Website Hits Per DaySFA Website Hits Per Day

0

100

200

300

400

500

2002 2003 2004 2005

2002

2003

2004

2005

0

100

200

300

400

500

2002 2003 2004 2005

2002

2003

2004

2005

1313

SFA Funding SFA Funding SFA Funding SFA Funding

01000002000003000004000005000006000007000008000009000001000000

2002 2003 2004 2005

2002

2003

2004

2005

01000002000003000004000005000006000007000008000009000001000000

2002 2003 2004 2005

2002

2003

2004

2005

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The people in this room will find The people in this room will find the cure(s) for sarcoma!the cure(s) for sarcoma!

The people in this room will find The people in this room will find the cure(s) for sarcoma!the cure(s) for sarcoma!

We want to helpWe want to help..We want to helpWe want to help..

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THANK YOUTHANK YOUTHANK YOUTHANK YOU

WWW.CURESARCOMA.ORGWWW.CURESARCOMA.ORG

OrOr

jody@curesarcoma.orgjody@curesarcoma.org

WWW.CURESARCOMA.ORGWWW.CURESARCOMA.ORG

OrOr

jody@curesarcoma.orgjody@curesarcoma.org