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Patient Advocacy. Bruce MacDonald JHYSF Meet the Sarcoma Experts MGH - Nov. 22, 2008. Why Am I Here Today?. Why Advocacy Is Important Especially with Orphan Disease. YOU know your body better than anyone YOU have a vested interest in your survival

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Patient advocacy l.jpg

Patient Advocacy

Bruce MacDonald

JHYSF

Meet the Sarcoma Experts

MGH - Nov. 22, 2008



Why advocacy is important especially with orphan disease l.jpg
Why Advocacy Is ImportantEspecially with Orphan Disease

  • YOU know your body better than anyone

  • YOU have a vested interest in your survival

  • YOU must take an active role in treatment

    “The key to surviving...get very very angry, very very smart, and very very organized”

    Norman Scherzer - Founder of Life Raft Group


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Sarcoma Foundations

  • JHYSF

    http://jenniferhunteryatessarcomafoundation.org/

    • Sarcoma Research at MGH

    • Meet the Experts Seminar

    • Support Available for Patients in Need

  • LMSdr

    http://www.lmsdr.org/index.php

    • Pre-clinical Research Grants

    • Comprehensive List of Clinical Trials

    • Excellence in Care Award


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    Sarcoma Foundations

    • Liddy Shriver Sarcoma Initiative

      http://sarcomahelp.org/

      • Pre-clinical Research grants

      • Comprehensive List of Clinical Trials

      • Esun Newsletter

      • Faces of Sarcoma

  • Kristen Ann Carr Fund

    http://www.sarcoma.com/

    • Surgical Fellowships at MSKCC

    • Sarcoma Lab at MSKCC

    • Sarcoma Newsletter


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    Sarcoma Foundations

    • Sarcoma Alliance

      http://www.sarcomaalliance.com/Main.html

      • Comprehensive list of clinical Trials

      • Peer to Peer Network

      • Funding for appointment at Sarcoma Center

      • Weekly Sarcoma Chat Sessions

  • Amschwand Foundation

    http://www.sarcomacancer.org/

    • Funding of Pre-clinical Research

    • Comprehensive guidelines for newly diagnosed

    • Support Housing Initiative for patients families


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    Sarcoma Foundations

    • Sarcoma Foundation of America

      http://www.curesarcoma.org/

      • Fund pre-clinical research

      • Advocate for increased government funding

      • Educate patients on treatment options

  • NLMSF

    http://www.nlmsf.org/

    • Fund pre-clinical research

    • Advocate for increased government funding

    • Educate patients on treatment options


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    Patient Research Tools

    • NCI Clinical Trials

      http://www.cancer.gov/clinicaltrials

      • Research all clinical trials with powerful search tools

  • Pubmed

    http://www.ncbi.nlm.nih.gov/pubmed/

    • Research peer reviewed papers on any medical issue

    • Find info on treatment options, new drugs, basic science

  • Google Alerts

    • http://news.google.com/alerts

      • Have emails sent once a week for any search topic


  • Advocacy teamwork 2008 excellence in care award l.jpg
    Advocacy + Teamwork =2008 “Excellence in Care Award”


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    Powerful On-Line Advocacy

    • ACOR (Association of Cancer On-line Resources)

      http://www.acor.org/

      • 836 Leiomyosarcoma subscribers

      • Over 159 mailing lists (many forms of Sarcoma)

      • Share information on treatment options

      • Learn real time info on clinical trials

      • How to deal with side effects

    “Together we are more, and more effective, than we are separately.”

    Dr. Doreen Kossove, LMS Patient and active participant in ACOR


    Discover treatment options sample of things i found via acor and research l.jpg
    Discover Treatment OptionsSample of things I found via ACOR and Research

    • Aromotase Inhibitors

      • Now in clinical trial with Uterine LMS

    • Molecular Profiling

      • Now in clinical trial for any cancer tissue

    • Chemotherapy Assay

      • Clinical trials with ovarian and breast cancer

    • Rexin-G

      • Now in Phase II clinical trials with sarcoma

    • Reolysin

      • Now in Phase II clinical trials with sarcoma


    Patient driven collaboration l.jpg
    Patient Driven Collaboration

    • CTOS - Connective Tissue Oncology Society

      http://www.ctos.org/

      • Founded in 1995 by wealthy patient to spur collaboration.

      • Now over 400 members meet annually

  • SARC - Sarcoma Alliance for Research through Collaboration

    http://www.sarctrials.org/public/pag1.aspx

    • Founded by members of CTOS

    • Enable clinical trial collaboration around the world


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    Additional Resources

    • Cancer Research Institute

      http://www.cancerresearch.org

      • Excellent collaborative foundation

      • Dedicated to cancer immunology

    • Leiomyosarcoma

      http://www.leiomyosarcoma.info/

      • Authored by Dr. Doreen Kossove

        • Comprehensive guide to LMS treatments


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    Support JHYSF in 2009Our team of >70 from 2008


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    In Memory of Suzanne Ash Kurtz

    • Founder of LMSdr

    ..... “hope alone is not a plan”


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