by Jill Holdren; with Ana Lopez, Roxana Lopez, Debbie Setuain, and Judy Plymale
Five FORCE advocates—Ana Lopez, Roxana Lopez, Debbie Setuain, Judy Plymale and Jill Holdren—recently had the opportunity to gather with more than 55 other advocates to attend Project LEAD, the National Breast Cancer Coalition’s (NBCC) prestigious week-long training on the science of breast cancer. From different professional and cultural backgrounds, we represent a diverse set of experiences and perspectives. Our small group includes a previvor, a young survivor, a couple of not-so-young breast cancer survivors, and an ovarian cancer survivor. Among us, we have a P53 mutation carrier and multiple BRCA mutation carriers. All of us found Project LEAD to be a powerful and valuable learning experience.
Project LEAD consists of five jam-packed days of learning (two half days and four full days). Topics include the biology of breast cancer, genetics, epidemiology and immunology, evidence-based healthcare and NBCC’s history and policy priorities.
Each participant is provided with either a thick binder or an Ipad of materials and has access to the lecture notes and supplementary resources in a Dropbox folder pre-course, during, and after. It’s a very good thing we go home with all the materials, because a LOT of information is covered in this five-day course, and we expect we will be referring to these resources for a long time to come. As Judy remarked, “I have been lucky enough to participate in a lot of different trainings, but this is a more comprehensive training than any other I have experienced.”
Each day, intensive lectures by world-class researchers are followed by breakout sessions with smaller study groups of 8 to 10 people, in which the groups work through the lecture material in a hands-on way. Each participant is assigned to a mentor prior to the start of the course; we remain with that same mentor and study group throughout the course, allowing us to develop both deeper understandings of the material and deeper relationships with a subset of participants. A scientific mentor also participates in every study group session and offers expert guidance if the group gets stuck on a concept, has questions that were not answered during the lecture or needs other clarification.
Our group of five was impressed by the expertise and background of the lecturers, as well as the quality of their teaching and their accessibility. There are no “dumb” questions at Project LEAD, although sometimes there is not enough time to get questions answered in a lecture period and participants need to hunt down the faculty at breaks or meals to continue the conversation.
Both the pace and the material are challenging, but questions are encouraged, faculty are very approachable and the entire atmosphere is supportive, non-judgmental and encouraging. Scientific mentors/faculty are accessible not only during study group breakout sessions but also at every meal—and there are lots of meals!
The diversity among participants in terms of backgrounds, diagnoses, ages, and geography is huge, which also provides a diversity of insights, experience, and knowledge. While there are opportunities to interact with other participants, especially at meal times, our group did note that there are fewer opportunities for talking with others—especially outside of our study groups—than at many advocacy conferences and events, simply because the schedule is so packed and intense. That said, each of us left Project LEAD not only with new knowledge and tools to be more effective in our continued advocacy, but also with new friends and colleagues.
Project LEAD is held in La Jolla (San Diego), California at a beautiful inn just a mile from the beach, next door to the Salk Institute and across the street from UC San Diego. Post doctorates from the Salk Institute serve as mentors in some of the study groups, and a couple of groups, including Ana’s and Roxana’s, got to take personal tours with their research mentor at the institute.
A point that was made early on and often during the course is that the Project LEAD experience, much like any of our advocacy work, is not about “your” cancer. That is, it is not about learning more about how your cancer developed, or potential treatments for it, or how to prevent your cancer. Rather, Project LEAD is about developing as solid a foundation as possible in a week about cancer biology, genetics, immunology, epidemiology, and public policy so that you can critically and actively engage in the science and policy across the spectrum of breast cancer, and ultimately do your part to end it.
As much as it is possible to get lost at times in the details of immunology and biology, the course has a practical focus throughout: increasing participants’ ability to effectively and meaningfully engage in research and policy advocacy. To that end, one of the final activities of the course is to create a “graduate action plan,” in which each participant commits to a series of activities in support of NBCC’s objectives, to which NBCC holds us accountable.
We encourage anyone who wants to take their research and public policy advocacy to the next level to apply to Project LEAD. It’s a unique and powerful learning experience. Be prepared for long days, challenging concepts, hard work, a beautiful location, lots of good food, new friends and colleagues, and tools and inspiration for the hard work ahead.Tags: FORCE, genetic testing, hereditary cancer, previvor, research, research advocacy, research advocate