Patient Advocacy

Bruce MacDonald

JHYSF

Meet the Sarcoma Experts

MGH - Nov. 22, 2008

Why Am I Here Today?

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

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

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 Fundhttp://www.sarcoma.com/

• Surgical Fellowships at MSKCC• Sarcoma Lab at MSKCC• Sarcoma Newsletter

Sarcoma Foundations• Sarcoma Alliancehttp://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 Foundationhttp://www.sarcomacancer.org/

• Funding of Pre-clinical Research • Comprehensive guidelines for newly diagnosed• Support Housing Initiative for patients families

Sarcoma Foundations• Sarcoma Foundation of Americahttp://www.curesarcoma.org/

• Fund pre-clinical research• Advocate for increased government funding• Educate patients on treatment options

• NLMSFhttp://www.nlmsf.org/

• Fund pre-clinical research• Advocate for increased government funding• Educate patients on treatment options

Patient Research Tools• NCI Clinical Trials

http://www.cancer.gov/clinicaltrials• Research all clinical trials with powerful search tools

• Pubmedhttp://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”

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 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• 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 Collaborationhttp://www.sarctrials.org/public/pag1.aspx

• Founded by members of CTOS• Enable clinical trial collaboration around the world

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

Support JHYSF in 2009Our team of >70 from 2008

In Memory of Suzanne Ash Kurtz

• Founder of LMSdr

..... “hope alone is not a plan”