Appendix 2 Application for DOD Scientific Merit Review/Consumer Reviewer Personal Statement on Advocacy and Education March 30, 2003 It is a great honor to be nominated by the Ithaca Breast Cancer Alliance to serve as a consumer reviewer on the Congressionally Directed Medical Research Program. I have been involved with this wonderful organization, which was founded a few years before my breast cancer diagnosis by women who were themselves breast cancer survivors, since 1996 when at the young age of 42 I received my diagnosis. Almost immediately after my treatments began, I started working with the Breast Cancer Alliance. As a client, I attended weekly support group sessions. In late 1997, I began volunteering: as an IBCA Helpline Volunteer I answered questions, provided referrals, and connected callers with others who have had a similar experience. As an IBCA Buddy, I met on a one-to-one basis with others facing a breast cancer or other breast health issue. Those activities continued until early 2003. Since 1999, I have served on the IBCA Board of Directors; since 2002, it has been my privilege to serve as board president. Just because I have been disease free now for nearly seven years doesn't mean I'm putting the past behind me and forgetting about breast cancer. Instead, I am trying to turn a terrifying experience into a positive one by giving to others what was so unselfishly given to me. I keep informed about issues related to breast cancer and keep myself educated by: • Whenever anyone will listen, I talk about my experiences with breast cancer and offer information about breast cancer detection and treatment. • As a Project LEAD graduate (sponsored by the National Breast Cancer Coalition), I participate in a quarterly Journal Club whereby articles about breast cancer research are read and discussed. • I subscribe to an Internet service that provides daily breast cancer in the news updates. • The Ithaca Breast Cancer Alliance offers a monthly Internet newsletter that includes reprints of articles about current research and other issues. • I maintain constructive relationships with researchers at Cornell University and elsewhere to keep apprised of the current scientific knowledge of breast cancer. • I monitor any new initiatives in the area of breast cancer protection, detection, and prevention. • To ensure the vital services continue, each year I co-organize with Ithaca area gardeners the Plants for Life sale and I march with the Ithaca Breast Cancer Alliance during its annual Walkathon in October to help raise funds and awareness. My interest in health advocacy has been a lifelong one. Since I was diagnosed at age 6 with a slight, though bothersome and uncorrectable hearing loss, I have witnessed or interacted with health care providers, and I have had to help people understand the importance of facing me and speaking clearly. That attitude has helped me throughout my life, during countless situations. Ultimately, it was my experience with breast cancer that made me, first, my own strongest advocate, and now an ally of others. The breast cancer diagnosis was the most frightening thing I have ever experienced. It was empowering, too. The shocking news made me an active partner in my healing. I learned that asking questions was the right thing to do and that there is no such thing as too many questions. I discovered how to do research beyond what is available at the library, and educated myself in the language of breast cancer. With help of my husband, who contacted leading experts about the procedures being recommended, I gained an understanding of how decisions are made. Through all of that, I realized I was learning how to advocate. It was something I wanted to do more effectively and to integrate into my professional life. Five years ago, I found out about the Health Advocacy program at Sarah Lawrence. It took until now to get myself to a place where I can finally take advantage of the program and begin to achieve the results I seek. I begin the two-year program this fall. While I have not served in peer review before, I have no doubt my participation in the DOD program will be of value. To this end, I can contribute a tremendous amount of interest, enthusiasm, and a willingness to learn and share. Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.