Breast Cancer Coalition of Rochester’s director to step down after 23 years at the helm. She talks about serving a population of 7,000 breast and gynecologic cancer survivors in 27 counties, including Monroe, which she says has one of the highest rates of breast cancer in NYS
By Mike Costanza
In the early days, the Breast Cancer Coalition of Rochester had one employee, Holly Anderson —the newly hired executive director, the staff, the receptionist and program coordinator. She’s served as executive director for 23 of the coalition’s 25 years. Anderson is stepping down Dec. 31.
Q: How did you get involved with the coalition?
A: I first met the founders of the Breast Cancer Coalition in 1999 when the organization was just one and a half years old. Now, this is our 25th year. We started literally at the kitchen table. We started out with an answering machine in someone’s basement and a P. O. box in Irondequoit and then moved into our first office on Park Avenue in 2000. We are in our third location now.
Q: What is Breast Cancer Coalition of Rochester?
A: We are independent, community based. We are not part of any national organization — we are the boss of us. I have been here for 22 years as executive director. We have four pillars — advocacy, education, support and research. We started primarily in just Rochester and Monroe County, but now we serve 27 counties in Central and Western New York. The coalition offers programs and services at no charge. We work with area oncologists and other medical professionals to offer a wide variety of education programs seminars. We serve more than 7,000 breast and gynecologic cancer survivors in 27 counties.
Q: How big is your budget?
A: Our budget is $1.2 million.
Q: Where does that money come from?
A: We do three major fundraisers a year. We do a fall event. We also do a golf tournament and we do a pink and teal challenge — a 5K walk or run on Mother’s Day weekend.
Q: Is that all?
A: We are a United Way donor-designated agency and also receive direct donations from people who are giving in honor or in memory of someone. We receive grants. Third-party fundraisers from friends in the community benefit us. In October, we see a lot of high school and college teams doing events to benefit us. We feel very honored and privileged when a high school or college group picks us for where those charity dollars go. It’s tough to compete with those national organizations. You can give a $100 to a national organization, which might be like a drop of water in the ocean — or you can give it to a local organization that is serving our region where it would have a huge difference right here in our community.
Q: How big is your staff?
A: The more programs and services we added, the more staff that we needed. We started out with just me and one employee and we now have 11.
Q: So, the need is there?
A: Yes. We’ve grown and it’s been — it was never our intention to really swell in the way that we did — but it’s really the need. Monroe County has one of the highest rates of breast cancer in New York state. The numbers change from year to year. It’s a significant number in this county; we don’t know why.
So much of the attention to breast cancer when we started was on screening and early detection initiatives. Those are important, but what next? You know, what do I do now? I was diagnosed in 1999 and there was nothing out there. So much focus was on pink ribbons, screening and early detection. OK it works, but now what? We were determined to be the “now what.”
Q: How do you help people?
A: One way the coalition supports gynecologic cancer survivors is by pairing an individual with a peer mentor as part of our PALS Project. Our trained peer mentors reach out to those who desire to speak with a survivor who has faced a similar situation.
Breast cancer is not a plain vanilla disease. It is very complex. There are different sub types of breast cancer and ways of treating it. I think that is one of the greatest strengths that we have as an organization is helping people sort out what they need to know; what is it about their diagnosis that they are likely going to hear from their doctors and specialists. What’s coming at me? Those are really key parts of the discussion.
When I started, I was all alone. I’m a nurse. I’ll sit down with them and talk with each person about their diagnosis and help them understand, sort out the nuances, help them figure out what type of questions they might be asking of their care team.
We match people up with other survivors with a similar diagnosis, similar age, similar walk of life. We really try to help people connect with others that they could potentially relate to. We meet with each survivor that contacts us. In 2014, we began serving breast and gynecologic cancer survivors; there are a lot of similarities with the way these two cancers are treated.
Q: What is next for you?
A: I need a slower pace. After 22 years, it’s time to turn the reins over to some new energy. I love the public policy piece; the work that we do — trying to get safer cosmetics, personal care products, funding initiatives for research.
I don’t think people, voters, realize how much power they have. We really look at our legislators as working for us. We reach out to them; tell them what we want them to do. It’s what everybody should be doing. They should pick up the phone and direct them; because they work for us. Believe me, industry and lobbyists are in there every day telling them what they want them to do. Who they really should be working for is us.
Though I’m planning my departure from the coalition, I’m not planning to retire. I’ll be seeking a new career path that allows me increased flexibility and a bit less responsibility. I’ll always be available to share institutional knowledge or provide historical context to our leaders of the coalition.
Breast Cancer Coalition of Rochester is located at 1048 University Ave, Rochester. For more information, call 585-473-8177 or email info@BreastCancerCoalition.org.