Advocates lead the way


This morning I joined the patient advocates of the Alamo Breast Cancer Foundation for Project LEAD.Project LEAD is the National Breast Cancer Coalition's premier science trainingprogram for breast cancer advocates. The LEAD courses teach survivors what they need to know to serve effectively in a wide range of endeavors, from serving on education panels in their own communnity to helping determine where the Department of Defense awards research funds for breast cancer.I took part in Project LEAD in the mid-'90s in Los Angeles where, for three days, around 40 survivors heard top scientists talk about studies, how they were set up and what to look for in basic science. I'll never forget meeting Mary-Claire King, PhD, the researcher whose work lead to the identification of the BRCA genetic mutations in breast cancer.I never saw myself as someone who could do science, particularly after changing my college major when I broke everything in the freshman chemistry lab. Those Bunsen burners were complicated.But I remember hanging on every word during that intense weekend in Los Angeles. It was great information, and I knew when I left that I could understand the basics, and that I would keep up with the studies from then on. Over the years, NBCC has added advanced LEAD classes, which is what the group this morning was taking. Many had already completed two or three of the LEAD options now available including the basic workshop, the LEAD Institute, a LEAD course on quality care, one on clinical trials and even one for global advocates. The attendees today were ready for the in depth discussion about how a primary breast cancer has one set of mutations but may have others when it metastasizes, meaning different treatment is needed – and once again pointing out the challenges of killing something that mutates as it moves.Advocates heard a panel discussion with leaders in quality care, followed by NBCC President Fran Visco, who presented plans for Breast Cancer Deadline 2020, outlining how the project will identify the most important questions. Far from passive, the advocates peppered all the speakers with questions during the question and answer session.It made clear the complicated issues of breast cancer and the challenge of ending this epidemic once and for all. But when I hear these women speak I am filled with hope. These advocates are a stellar group: committed to their constituents and the issues they face. If you haven't heard of Project Lead, I encourage you to find out about the next workshop and sign up. You won't be sorry.

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