National Breast Cancer Coalition's Project L.E.A.D - Creating Change

Sometimes the most unexpected gifts come least where you expect them. I had the privilege of attending the National Breast Cancer Coalition’s (NBCC) Project L.E.A.D. recently and it truly changed my life. It has been over a year since my diagnosis. I never would have imagined when I got that call, that now, I would be sitting among peers that are doing the kind of work that effects long term change and impacts thousands of women yearly, even saving lives.Project L.E.A.D. is a science training course designed to help breast cancer activists influence research and public policy processes. To get into the program, you had to follow a stringent application process, writing essays and stating why and how you would work to fight breast cancer. Many applied and didn’t get in, so for those of us who did get in, we knew we needed to take advantage of the resources at hand.During this intense five-day course, fifty other breast cancer advocates – survivors and non-survivors alike were focused on one agenda – preparing ourselves to participate in forums like lobbying, achieving legislative reform, influencing clinical studies, breast cancer treatment and in the end, find a cure for breast cancer.I have never been so honored being in the midst of such amazing women. As I sat in hour after hour of sessions, being taught by the best scientists and researchers in the filed, I learned about basic biology, the principles of genetics, how DNA and RNA function, how scientists conduct research, the importance of protein in terms of cell generation and degeneration, epidemiology, how to design studies and clinical trials, and how to critically assess scientific articles, among other things. The thing is, a year ago, all this may have seemed boring and uninteresting to me. To be honest, I probably would have been bored out of my skull, as maybe some of you are reading this, but now, I realize how important my participation is in relationship to ending breast cancer. I’m telling you, you never want to get that call.As I may have said before, change starts with one person. If each one of us took up a cause, any worthwhile cause, we would change the course of history and could eradicate, hunger, poverty and disease in the world.In case some people have not realized, breast cancer has become an epidemic. Here are the statistics:* Every three minutes, a woman in the United States is diagnosed with breast cancer (www.breastcancer.org). According to the American Cancer Society, about 178,480 women in the United States will be found to have invasive breast cancer in 2007. About 40,460 women will die from the disease this year. 11,100 women diagnosed this year will be under age 40, and more than 1,100 of those women will die. * African American women are more likely to die from this disease.* Currently, there are slightly over 2 million women living in the United States who have been treated for breast cancer. * The chance of a woman having invasive breast cancer some time during her life is about 1 in 8.* The chance of dying from breast cancer is about 1 in 33. * According to the National Cancer Institute, one in every 229 women between the ages of 30 and 39 will be diagnosed with breast cancer within the next 10 years.* According to the National Cancer Institute, breast cancer is the leading cause of cancer death in young women ages 15-54.* There are more than 250,000 women living in the United States today who were age 40 or under when they were diagnosed with breast cancer. * Young women's cancers are generally more aggressive and result in lower survival rates. * Young women with breast cancer generally have more advanced cancers at diagnosis, and higher mortality rates.
At the conference, I spent a lot of time with three of the most amazing women I have ever met in my life, Jenna, Stefanie and Kristen, two of whom have metastatic breast cancer. They are the same age as me. One of them was told that she may not live more than a year or two, but she has. I have yet to see women as alive, as purposeful and as positive as those three. They are fun, vivacious, powerful and articulate. Oh…and they have cancer. As we spent time together, I was overwhelmed by stories of their treatment and inspired by how they see themselves, not as victims, but as warriors, determined to harness and embrace all that life has to offer, and to create a better legacy for the future. Even though they may not be able to bear children, the fruits of future change are their babies.You see, cancer in young women is so aggressive, that all of us were given aggressive chemotherapy treatments, which in most cases destroys the ovaries, leaving the patient unable to bear children. For those who would prefer to sit on the sidelines, I ask you, who will carry on the legacy, if one in 8 women die of breast cancer? Who will carry on our legacy if the women treated will be unable to bear children in the future? For the men who feel that they are not affected by breast cancer, who will care for the children and be partners to those fathers if the women are being killed by this disease. Who will populate the world with more men?The way I see it, our participation in this is not optional, it is mandatory. Who are we to demand better treatments and a cure if we don’t take the time to get involved in how that happens. The women who form NBCC give hours of their time, their resources and their energy to support the cause. Many people walk the walks, do the races and wear the pink ribbons, sport them on bumper stickers, etc. Particularly in October, for some, supporting breast cancer has become a fad, but it is not a fad for many, like my friends and me, who are impacted by breast cancer. We take it very seriously. While we were together at the conference, one friend got the call that another friend had died. We held her while she cried and hugged each other close, reassuring her and ourselves, holding on to each other, because you never know who will get the next call that someone is deteriorating or has lost her battle.As we sat in the corner huddled and tangled together, crying or trying not to cry for the one who had gone and for what so many women will have to go through, we came to a realization, stronger than ever, that we are the ones who need to make the change. I could not bear the thought that one of us in the circle may not be around the next time one of those calls come; that she might be the one the call was about. Throughout the week at the hotel and on the weekend, we talked to anyone wet met about breast cancer and how it might impact their lives. We told them what we did and encouraged them to be involved participants in their lives or in the community. We are not shy about talking about it, because for us, Breast Cancer Advocacy is an everyday event, not something we just do in October. Cures just don’t happen overnight, they take time, and for many, time is running out; for some, it already has.We realized that we can’t just sit back and wait passively for scientists and researchers to give us a cure. Those scientists and researchers need active participants, people who are willing to roll up their sleeves and get involved, people who are going to go the extra mile, take the time to learn, and invest of themselves on a consistent basis. My goal is that we will find a cure in my lifetime. Project LEAD to me, was a gift. I gave of my time, and it gave me something invaluable in return. It gave me the vehicle to realize that I hold more power and influence over the agenda of breast cancer than I thought I did, and we all do. Can you imagine that you could sit on the board of organization or have a seat at a table to decide what kind of grants get funded to do research that could be the cure for breast cancer? Can you imagine working with scientists to design a clinical study that will increase the efficacy of chemotherapy and decrease the side effects of it, like heart trauma and infertility? Can you imagine that by participating in a clinical study, that researchers can find a way to turn off aberrant cells from dividing rapidly and that you might be a part of finding the cure? Think about it. If you get involved, perhaps one less person could be impacted by the disease. What do you think of THAT?In the future, you will be hearing more from me on how you can participate in creating this type of change. I will hold you accountable, because you are accountable to yourselves and the ones you care about, to get involved with this agenda; and you need to get involved now.Until then, peace, love and hair grease. Haha. I’m laughing because I’m happy, but I’m really serious. Get off your butts and do something.Stay tuned for more.