Patient Advocacy


  • 2008-2010 Steering Committee, BRIDGE Global Survey of Metastatic Breast Cancer.  Survey of 1,342 women in 13 countries around the world. Research supported by Pfizer, fielded by Harris International.  Presentations in which I was lead author/presenter: poster presentation at St. Gallen conference, 2009; Podium presentation at 2nd Annual Africa Breast Cancer Conference, 2009; Poster presentation San Antonio Breast Cancer Symposium, 2009; Preparation of article on BRIDGE SURVEY for submission to Journal of Clinical Oncology; and  Presentation for "Lunch and Learn" session at Pfizer headquarters. BRIDGE Survey website: http://BRIDGEmbc.com

  • 2008-2010  Member of FDA Risk Communication Advisory Committee.
  • 2005-2010  Website owner and developer, AdvancedBC.org  A resource for people living with metastatic breast cancer.
  • 2007  Honored for "significant and sustained contributions to the fight against cancer,"  American Association for Cancer Research Annual Meeting, Los Angeles, 2007.
  • 2005-2010   Patient Advocate, Center of Excellence (COE) Studies Directed Toward the Eradication of Brain Metastases of Breast Cancer, involving more than 20 scientists, physicians and advocates, funded for 5 years by the  Department of Defense Congressionally Directed Medical Research Programs.  This COE is directed by Dr. Pat Steeg, Chief, Women's Cancers Section, Laboratory of Molecular Pharmacology and Director, Molecular Therapeutics Program Center for Cancer Research, National Cancer Institute.  Designed and co-developed  BrainMetsBC.org  a website for patients and families facing a diagnosis of brain or other central nervous system metastases, launched December 2007.
  • 2005-2009   Member, Forum on Drug Discovery, Development and Translation, Institute of Medicine, the National Academies of Science.   "The Drug Forum includes leaders from private sector sponsors of biomedical and clinical research; federal agencies sponsoring and regulating biomedical and clinical research; foundations; the academic community; consumers; and federal and private health plans.  The Forum explores approaches to increasing the number, quality, and value of new drugs by making the drug development process faster, safer, more efficient, and more focused on the needs of patients.  The range of issues the Forum addresses includes the full drug development pipeline-from drug discovery and regulatory approval to translation of research into clinical practice."
  • 2005-2007   Web-based Survey of Women with Advanced (Metastatic) Breast Cancer in conjunction with Living Beyond Breast Cancer, Ardsmore, PA. This in-depth needs assessment survey polled nearly 700 women living with metastatic breast cancer on their support, information and practical needs.  A poster was presented at the 2005 San Antonio Breast Cancer Symposium, a white paper, Silent Voices Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences For Information, Support, and Practical Resources was presented, summer 2006.  The survey has also been presented at the American Society for Psychosocial Oncology annual conference, Austin, TX, February 2007 and at the Eighth Annual New Strategies in Breast Cancer conference, April 2008. 
  • 2005, 2006, 2007 Advocate Peer Reviewer, California Breast Cancer Research Program, Evaluated and rated research proposals in advance of a  review of research proposals in meetings with scientists, clinicians and advocates for the purposes of recommending funding. 
  • 2001-2007   Patient Consultant with the FDA Cancer Drug Development Program
    Patient Representative with the Oncologic Drugs Advisory Committee, ODAC  Patient Consultant responsibilities involve representing patient interests, experiences and needs in working along with FDA staff in the planning and conduct of clinical trials with pharmaceutical companies. As a Patient Representative, I have sat as a voting member of the Oncologic Drugs Advisory Committee, as well as serving on several other FDA advisory committees.  I have participated in a monthly FDA training course offered by teleconference, and have drafted a brochure for new Patient Representatives, and served as faculty for several training seminars. .
  • 2004   Member, Committee on Alternative Funding Strategies for DOD's Peer Reviewed Medical Research Programs, Institute of Medicine, the National Academies.  Report Published September 8, 2004: Strategies to Leverage Research Funding: Guiding DOD's Peer Reviewed Medical Research Programs.
  • 2004-2007   Member, Advisory Board. RegistHER Study, Genentech. RegistHER is a prospective observational cohort study that will follow metastatic breast cancer patients with HER2+ breast cancer from the time of their metastatic diagnosis for the rest of their lives, tracking patterns of clinical practice and response to treatments.  Posters have been presented at a number of conferences, and a manuscript on central nervous systems metastases has been submitted for publication.
  • 2003-2006  Member, Development committee for the LEADGradsOnline.org website a web-based resource for the 1,100 graduates of NBCC's science training course for advocates, Project LEAD, as well as LEADers, a mailing list.
  • 2003-2010    Consumer Peer Reviewer for the Cochrane Collaboration   Participation as a Peer Consumer Reviewer for the Cochrane Breast Cancer Group in the review of protocols and preparation of new Cochrane Reviews.
  • 2003   Commentator, California Breast Cancer Research Program After meeting with Advisory Board and reviewing data from the California Cancer Registry and related literature on disparities in breast cancer care, wrote a detailed white paper, entitled Treatment and Outcomes For High-risk and Metastatic Breast Cancer in California: An Inquiry into Disparities and Research Needs. This white paper was presented at a meeting of the advisory board for the California Breast Cancer Research Program, and is available online.
  • 1994-2005    Breast Cancer Discussion List (ListServ)  Nine years of daily participation in an online Internet discussion group formed for a general discussion of breast cancer related issues with several hundred members from the United States, Canada, the U.K. and many other countries around the world. E-mail sharing of evidence-based information and emotional support to newly diagnosed patients, and to women and their families who are dealing with advanced breast cancer.  This work formed the basis of my book, Advanced Breast Cancer: A Guide to Living with Metastatic Disease.  With the list owner, Dr. Jon Church, I prepared a study of usage patterns, perceived usefulness and attitudes of participants in this mailing list, which was presented as a poster at the San Antonio Breast Cancer Symposium.
  • 1999-2010    BCMETS  Discussion List (ListServ) for Metastatic Breast Cancer  Daily participation in this mailing list dedicated specifically to the discussion of advanced breast cancer, consisting of nine hundred patients and family members dealing with metastatic disease and related treatment and support issues. This work involves my keeping up with clinical research in the field, attending medical and advocacy conferences, and translating complex medical information for patients to use in making informed, evidence-based treatment decisions. 
  • 1999-2010     PAIR (Patient Advocates in Research) Discussion list  This invited mailing list is comprised of patient advocates who have a specific interest in cancer research and related issues.
  • 1992-2010   Advocacy efforts on behalf of cancer organizations National Breast Cancer Coalition, Y-ME, NABCO, SHARE, American Cancer Society, Living Beyond Breast Cancer, Young Survival Coalition, Breast Cancer Action and numerous other regional and local support organizations. Consultation and presentations at many breast cancer support groups and organizations on the topic of breast cancer survivorship, advanced breast cancer, support groups, researching breast cancer on the Internet, writing as a way of healing, updates on current breast cancer research, and medical conference reports, etc.  (See Speaking Engagements)
  • 2000  Recipient of Advocacy Award, National Breast Cancer Coalition  This recognition is presented to three women each year for their work as breast cancer advocates.