Name: Bob Riter
Location: Ithaca, NY
What’s the primary focus of your advocacy?
Research Advocacy and Patient Support
When and how did you get started?
I was diagnosed with breast cancer in 1996. I became involved with the local cancer support organization (then known as the Ithaca Breast Cancer Alliance and later renamed as the Cancer Resource Center of the Finger Lakes) as a client, volunteer, board member and eventually a full-time staff member. I worked with clients, ran support groups, wrote grant proposals, and did community education. I enjoyed the variety and loved that I could do something concrete to help people on a regular basis. Although I’m now retired from that organization, I continue to facilitate the men’s support group (the “Breakfast Club”) every Friday.
After a few years, I got interested in research advocacy. I participated in NBCC’s Project LEAD and began to serve on the Department of Research Breast Cancer Program. Later, I attended AACR’s Scientist-Survivor Program and just loved it. (I remember thinking that I’ve found “my people.”) As is customary, we were charged with thinking about how we could continue our advocacy once when we returned home. Ithaca is the home of Cornell University and is the site of a considerable amount of basic science research related to cancer. (Clinical research takes place on Cornell’s Medical Center which is four hours away in New York City). I decided that my focus would be connecting cancer patients and basic science researchers in Ithaca. I’m not a scientist, but I decided to follow the guidance of “bloom where you are planted.”
It took a few months to make right connections, but the Cornell Community Cancer Partnership began to take off. We concentrated on making doctoral students and post-doctoral fellows comfortable with the inclusion of advocates.
Has the focus of your advocacy changed over time?
When I began, I very much focused on male breast cancer. I made it a point to attend breast cancer conferences and meetings to literally have a seat at the table.
Within a few years, my interest expanded to breast cancer more broadly. I don’t represent only men with breast cancer, I represent all people with breast cancer.
More recently, I’ve become active in the pan-cancer space, especially relating to advocacy. Site-specific cancer organizations have developed organically, but there is so much that we can learn from each other.
What do you find most meaningful about your advocacy?
Much of what I do – and what I enjoy – relates to communication and building bridges. I love connecting researchers and patients/survivors and helping scientists communicate their research to non-scientists. In terms of direct patient support, I often talk with people who have been recently diagnosed and whose heads are spinning in circles. I try to slow their spinning and help them identify and focus on the most important issues. Once they do so, they’re in a better position to talk with their providers and their loved ones.
Several years ago, Marci Landsmann of Cancer Today wrote an article about me called The Bridge Builder. It really captured the heart of my advocacy work.
What do you find most frustrating about your advocacy?
There’s so much fragmentation in cancer and in the advocacy world. We’re often in site-specific silos. For example, I’ve been diagnosed with prostate cancer in addition to the breast cancer. (I have a genetic mutation, CHEK2, which may be linked to one or both cancers). When I attend scientific or advocacy conferences, it’s rare to see breast cancer and prostate cancer discussed in the same room even though they are biologically similar.
Why did you get involved with ACE?
I love that ACE is designed to bridge those silos, both across different cancer sites and across different forms of advocacy. I’ve learned so much and think about advocacy in new ways.
In addition, ACE is new, small and volunteer-driven, so there’s a real opportunity for all of us to contribute. I remember saying to Stacey, “I’d like to create a regular newsletter to share advocate news and resources.” She said, “Let’s do it!”
What is your position at ACE?
I’m the co-director of communications, focusing on the website and our monthly newsletter. For some reason, I enjoy finding and organizing information. (I think I was a reference librarian in an earlier life).
What would you like to tell us about your life outside of cancer advocacy?
Since retiring from full-time work, I amuse myself by taking photos of birds and other creatures that visit the imaginary “Bob’s Diner” which is a collection of bird feeders in my yard. I began posting daily photos with hopefully amusing captions on Facebook. That led to the publication of a book with a second one in the works.
