Indianapolis PurpleStride Co-Chairs Colleen and Rob Beeler spoke with Community Engagement Coordinator Paula Mukherjee about their personal motivations, fundraising tips, and goals for PanCAN PurpleStride 2024. This interview has been edited for clarity and length.

Paula: What first brought you to PanCAN?

Colleen: When Rob was diagnosed, I was trying to find what the best care was in Indianapolis. At that point, you're Googling everything and trying to find any and all information about this cancer. I stumbled upon PanCAN and reached out. I talked to PanCAN Patient Services to get information about the cancer, the treatments, and which facilities have the most experience.

Once Rob began treatment, we got involved with PanCAN PurpleStride. It was 2019 when he was diagnosed, and we thought: we need to fight this. We need to bring our family and friends together to show support, not just for Rob, but also for his sister who passed away from pancreatic cancer.

Rob: In 2021, I saw a post from our local affiliate and reached out to say, “Hey, how can we help?” We were thinking we would hand out T-shirts at the walk or something like that. We had a call and by the end of it, we were PurpleStride Co-Chairs.

Paula: You’re both top fundraisers in Indianapolis, and your team Jay Walkers was the number one team at PurpleStride Indianapolis this year. Congratulations! What factors do you think contributed to your fundraising success?

Rob: We have a lot of contacts in the business community. We both work in the startup world, so we work with a lot of people who are very generous with their money. I think I have a pretty good story to tell about losing my sister to pancreatic cancer and then surviving it myself. I always feel like I am a direct recipient of the kind of research that's gone on, because the technologies that got me through it weren't available to my sister just three years earlier. There's hope, and we've seen it directly, so it's easy to convey to others why it's important to give.

Paula: We're starting a new PurpleStride season. What tips do you have for participants who would like to raise more than they did last year, or who are entirely new to the event?

Colleen: You have to get outside your comfort zone and not be afraid to ask. We have a story, but it took us some time to actually be able to communicate it because it's a hard story. It's one that's personal and there's grief associated with it. When you're ready, tell that story and just ask. People are a lot more receptive than you think they're going to be.

Paula: What's your strategy for working together successfully as co-chairs?

Colleen: That’s a whole therapy session! We've been married a long time. I like to say that he is strategy, and I am operations. We've done this before, so we know how to work with one another. We understand one another's strengths and weaknesses. We can take the best of both worlds and combine it without killing each other.

Rob: We would get involved with our kids’ activities and help with organization. We both have leadership roles at work, so we rely on some of those skills.

Paula: As PurpleStride Co-Chairs, you lead the PurpleStride Committee. How's it been working with your committee?

Colleen: It gets easier each year. This will be our third year. The first year we started, everybody was new. It was good and bad; we didn't have some of the legacy information to help us, but on the flip side, we were all in the same boat. We were all learning and trying to figure it out. We had the same goal, so it was easy to work with the team to make this a successful event.

We try to meet outside of just the committee meetings and get to know one another personally. It makes a world of difference to have that personal connection. We've been very fortunate. The team we started with is still together.

Rob: We also have an awesome Affiliate Chair, Jenny Bivans. Jenny sets the tone of “We're all in this together.” That's a huge factor in how the events have run over the last couple of years. It's very much a group effort.

Colleen: We have the team that works on PurpleStride, but it's all hands on deck. We then turn around and help with PurpleLight. It's not one event versus another event. It's for the greater good of the affiliate and PanCAN.

Paula: Are you looking for new volunteers?

Colleen: We are always looking for new volunteers! We struggled last year with getting volunteers in some of the key positions. You want new people coming in with new and different ideas, and you don't want your ideas to be stagnant. We're always willing to take volunteers, as everybody has different strengths that we can work with.

Paula: What elements of PurpleStride 2023 do you want to build on or improve for PurpleStride 2024?

Rob: We've laid out a few. One of the things we do each year, usually the night of the event, is a retrospective: what went well, what didn't, and what do we want to do next year? We want to improve sponsorship. We've got new Sponsorship Co-Chairs who are awesome, Stephen and Jason Moore. They’ve already brought in a number of sponsors, more than last year. That's been a success so far. We want to get more media coverage earlier, because we noticed that the first year we were PurpleStride Co-Chairs, we got really good media coverage and that made a big difference. The third area we're focused on improving is engaging the teams and Team Captains, making sure that the Team Captains are excited, communicating with their teams, recruiting more people, and thinking of creative ways to raise money.   

Colleen: From a participant standpoint, we are trying to reach more people outside of Indianapolis. It's not just people within central Indiana that are affected by this; it's all across Indiana. Reaching out to the whole state and letting them know that the affiliate exists is important.

Paula: What are some strategies for doing that?

Colleen: This year we're bringing PurpleLight back into the fold of events. We are trying to use media to reach out to a larger area. Our Mission and Outreach Chairs are trying to reach out to nurse navigators throughout the state. For example, one of our volunteers was down in Bloomington, which is south of Indianapolis, meeting with nurse navigators and talking to them about PanCAN and the resources available. We are trying to use all our volunteers to expand our outreach.

Paula: Rob, I'd love to hear more about your experiences with biomarker testing and immunotherapy.

Rob: When I was diagnosed, we caught it relatively early thanks to Colleen. However, it was not early enough to just go in and remove it. I started chemo and one of the first things the doctors did was genomic testing to look at the makeup of my tumor. The results at first weren't completely conclusive, but they got excited and said that it looked like I was MSI-high, that there was a strong genetic variance in the tumor, and that I may be eligible for immunotherapy. They did some further testing at a different facility and were able to confirm that I was a candidate for it.

After going through chemo and radiation, I did a couple doses of Keytruda prior to having a Whipple in July 2019. I had pain throughout all of my treatment. About two weeks after I took that first dose, my pain went away. After the surgery, they did a biopsy and said all of the cancer was dead in my tumor.

I feel like immunotherapy was a game changer. It was really critical. I know it's very rare in pancreatic cancer that it can be used. One of our hopes and goals with pancreatic cancer research is that immunotherapy can be applicable to a broader range of patients.

Paula: That's amazing. You mentioned Colleen played a role in the initial diagnosis. How did that come about?

Colleen: Good old-fashioned nagging!

Rob: I had some stomach pain, I had some back pain – the usual very vague symptoms you get with pancreatic cancer – but I was in a new job that was a little stressful. I thought that maybe I was getting an ulcer. I went to the doctor, and they said, “No, you have acid reflux. Here, take this medicine. Come back in two weeks if it's not better.” It didn't get better. I went back in two weeks. They said, “Try this medicine. Come back in two weeks.” When I was getting ready to go back that second time, Colleen said, “Tell them you want blood work and a scan.” I told the doctors that, and they said, “We really don't want you to waste your money. We know it's acid reflux.” I said, “I cannot go home and tell my wife I did not get these tests. So do the tests.” They did the blood work right then, then the scan about a week later. An hour or two after the scan, I got the call. It was the same doctor who told me, “We know it's acid reflux. You don't need this test.”

Paula: One of the barriers patients face is that step of advocating for yourself. Hearing your story is really important.

Rob: We learned that throughout the entire treatment process. We had awesome doctors, awesome nurses. But if we're talking to anybody about cancer and cancer treatment, that's the number one thing we'll say: “Push for what is right for you. Don't be afraid to ask.” We got second opinions. We moved to a new treatment place. While the doctors and nurses have the best intentions, sometimes they're not completely focused on what you need.

Paula: Did you suspect there was a genetic component because of your sister’s diagnosis?

Rob: It's interesting. I assumed there was some genetic component to it. They did genetic testing as well as genomic testing, and the genetic testing didn't show anything. They were really surprised. They said it's very rare to have multiple members of the same family with pancreatic cancer and there not be a genetic marker. But it could just be that they haven't discovered the specific gene.

Colleen: As a result of it, his sister and brother are involved in a clinical trial at Cleveland Clinic to help figure out the markers and the family connection.

Paula: Why should people in the pancreatic cancer community consider volunteering for PanCAN?

Rob: It helps connect them to other people in a similar situation, which is really therapeutic and useful. The highlight of PurpleStride for me this year was talking to the survivors on event day, chatting with them and learning about their stories. You can get so focused and feel like it's only happening to you. When you hear other people talk about it, it helps you keep it in perspective. You can learn from everybody else in the group, whether you're a caregiver or a family member or a survivor. It helps you understand that there are people out there to help you.

Colleen: The cancer journey can be very lonely and overwhelming. Knowing that there is a support network in your community is really important.

Please feel free to contact Colleen Beeler (rcbeeler@pancanvolunteer.org), Rob Beeler (robbeeler@pancanvolunteer.org), or Paula Mukherjee (pmukherjee@pancan.org) with any questions.