Patient Advocacy
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  • 1. Patient Advocacy Bruce MacDonald JHYSF Meet the Sarcoma Experts MGH - Nov. 22, 2008
  • 2. Why Am I Here Today?
  • 3. Why Advocacy Is Important Especially 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
  • 4. 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
  • 5. 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
  • 6. 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
  • 7. 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
  • 8. 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
  • 9. Advocacy + Teamwork = 2008 “Excellence in Care Award”
  • 10. 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
  • 11. Discover Treatment Options Sample 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
  • 12. 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
  • 13. 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
  • 14. Support JHYSF in 2009 Our team of >70 from 2008
  • 15. In Memory of Suzanne Ash Kurtz
    • Founder of LMSdr
    ..... “hope alone is not a plan”