Tell us a little bit about yourself.
I am a disease intervention specialist (DIS) for the New York State Department of Health. As a DIS, I work with individuals who test positive for chlamydia, gonorrhea, syphilis and HIV to ensure proper treatment, linkage to care, and to help clients refer their sex or needle sharing partners into medical care for testing and treatment. Prior to my work with the state, I worked in smoking cessation, as an advocate for battered women, and as a trainer and educator for lay and professional audiences on HIV and domestic violence.
I live in Amherst, NY, a suburb of Buffalo, with my two children, Margaret (10 years old) and Matthew (7 years old), and my partner Reed.
How did you first get involved with Breast Cancer Action?
I got involved with Breast Cancer Action after my friend Jeanette Koncikowski introduced me to the organization. Prior to BCAction, I was a member of the WNY Susan G. Komen Speaker’s Bureau for three years. I facilitated the majority of speaker requests received by the local affiliate during that time. I enjoyed immensely the opportunity to tell my story, giving voice to the realities of breast cancer and treatment, and providing inspiration and hope to those touched by breast cancer. More than that, telling my story was immensely healing for me following my own cancer struggles and while my mom was dying of ovarian cancer. Unfortunately, I always felt something was missing from my presentations. I couldn’t find my focus, couldn’t put words to a feeling I had. I wanted to leave people in the audience with something tangible, something they could do for people affected by breast cancer. Additionally, increasingly I was finding myself conflicted about the overwhelming pink influx I felt coming at me in every direction. I was truly feeling “pink fatigue.” I was feeling increasingly irritated that everyone affected by cancer has to be a “warrior,” they have to “beat cancer,” they have to “celebrate,” they have to embrace all things pink. I was frustrated by the growing popularity of using pink ribbons in clever marketing, claiming to raise awareness, but I suspected unscrupulous businesses were earning profits on the backs of breast cancer survivors. Jeanette told me a little about the organization and I was instantly hooked. I knew with BCAction I could find my focus.
Why did you decide to join the Community Leaders for Change?
I enjoy grassroots activism and have spent the bulk of my career involved with various social justice campaigns. Community Leaders for Change seemed a natural fit for my skill set and desire to be part of finding a solution. Furthermore, I have become friends with hundreds of young breast cancer survivors through various social media outlets. Many of these young women are dealing with metastatic cancer. The constant undercurrent of pink positivity and forced warrior attitude seems to be dismissive and hurtful to women with metastases. These women tell stories of feeling isolated and excluded from the mainstream breast cancer movement. I am excited to be part of an organization that includes the needs of all people affected by breast cancer by providing a different, more honest, more inclusive message to the community.
What’s your personal philosophy on what should be done to end the breast cancer epidemic?
I like the idea of holding corporations accountable for pollution and environmental toxins. Being a BRCA1 carrier, I know that my genetics make it a little easier for me to grow cancer, but without the outside exposure to toxins and pollution, perhaps I would be a previvor right now instead of a survivor?
What are your goals as a Community Leader and breast cancer advocate?
Jeanette and I are excited to spread the word about BCAction throughout WNY. We will be calling on some of our contacts to invite us to their organizations so that we can discuss BCAction as well as find out and support the needs of folks in our area. To that end, I have been invited to speak to clients of a local provider working with the transgender community. I am so excited to not only give information but also learn from the community about what it is that we, BCAction, can do to assist this marginalized community.
What would you tell someone who is thinking about joining the Community Leaders for Change?
If you are tired of the trite “raise awareness” messages being promulgated all over the country, then join BCAction and become a Community Leader for Change. We are providing information on the true realities of breast cancer and looking for concrete solutions to end the epidemic so that we can make real change towards the ultimate goal of fewer incidences and less morbidity.