1. Research Advocacy A Survivor’s Perspective March 10, 2012

3. MOCA serves Over 800 ovarian cancer survivors More than 4,500 members Over 45,000 friends, family and donors

4. Medical Research MOCA is one of the top five private non- profit funders of ovarian cancer research in the country. In 2012,MOCA will have exceeded $3 million in research grant awards.

6. National Cancer Act December 1971 Cure cancer by 1976, the Bicentennial. “ The War on Cancer” Richard M. Nixon

7. Challenges & Opportunities

9. Who can be a research advocate? Someone who wants to help research progress Someone who conveys a collective patient perspective Someone who brings a consumer POV to the research process

10. Possible Research Advocate Roles Review and evaluate grant proposals Serve on Institutional Review Boards Research project engagement. Can be long term. e.g. SPORE projects Participate in research training for advocates

11.  To represent the ovarian cancer community.  To utilize life skills and experiences, harboring no conflicts of interest.  To understand that our role is not fundraising, watchdog advocacy, or direct patient support. 11 Research advocate role & expectations

12. Additionally… Willingness to read and study Ability to communicate clearly  To self-educate on  science  research concepts  terminology  To function as a team with researchers, focused on a common mission

13. How do we work? By asking questions from a patient perspective, keeping this awareness of the patient POV front and center.

14. Are we? YES!!!

15. Communication Challenges A long way from “The Big C,” but Cancer has its own language There’s no Rosetta Stone

16. Wit By Margaret Edson Cynthia Nixon in Wit The New Yorker, Feb 6, 2012 Photograph by Ruven Alexander

19. So… you think you want to be a grant reviewer? Here’s how this program works….. 19 Research Grant Program

20. 20 As an example…

21. How a major project comes to be…

22. The blockade of PD-1 during vaccination against ovarian cancer.

23. Strib headline

24. What is a SPORE? 24

25. Translational Research: Moving clinical observations to the laboratory Moving laboratory discoveries to clinical settings

26. M.D. Anderson Fred Hutchinson Center Mayo ClinicBrigham & Women’s Fox Chase

27. Quilts of the Women’s Cancer Program

28. Mayo Ovarian SPORE Research Advocate Program One advocate is engaged with each SPORE project –PARP Inhibitor with topotecan –Mechanisms of Immune Suppression –Measles Virus –PARP Inhibitor with Floxuridine

29. 29 Skills & Characteristics for SPORE Research Advocates Desire to learn Interest in science and research Listening skills Communication skills Collaborative skills Ability to be part of a team No personal agenda Assertiveness

30. How to get started Educate yourself on current research happening nationwide. Know where research happens in your community. Let OCNA know that you are interested.

31. 31 The Reward

32. Survivor Photo Minnesota Ovarian Cancer Alliance 2011 Walk/Run