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The PancChat Podcast is a collaborative effort from Let’s Win Pancreatic Cancer and the Pancreatic Cancer Action Network (PanCAN), inspired by the long-running #PancChat Twitter/X chat.
Hosted by award-winning journalist Alisyn Camerota, each episode features conversations with leading researchers, clinicians, patients, and advocates who are shaping the future of pancreatic cancer care and research. Together, we deliver expert insights, personal journeys, and the latest breakthroughs—bridging the gap between science and lived experience.
Whether you’re a patient, caregiver, healthcare professional, or simply want to learn more, join us to connect, be inspired, and learn how you can help to accelerate progress in the fight against pancreatic cancer.
Cindy Gavin:
Hi, everyone. I'm Cindy Gavin, CEO and co-founder of Let's Win Pancreatic Cancer. On today's podcast, we will hear from Kerry McKean Kelly from Kelly's Heroes about World Pancreatic Cancer Awareness Month and the excitement around advocacy. Now take it away, Alisyn.
Alisyn Camerota:
Hi, everyone. I'm your host, Alisyn Camerota. We want to welcome our listeners to the eleventh episode of PancChat. We also want to thank our sponsor, Revolution Medicines. Today we're exploring the power of advocacy to learn about the personal journeys and collaborations of advocates in the pancreatic cancer space. Our guest today is Kerry McKean Kelly.
Kerry is the founder of Kelly's Heroes, a New Jersey-based nonprofit dedicated to raising funds for pancreatic cancer awareness and research. She was inspired by her late husband, Steve Kelly, who was diagnosed with stage IV pancreatic cancer at age 53. And Kerry has channeled her grief into advocacy. She serves as the outgoing chair of the World Pancreatic Cancer Day Steering Committee and has been a member of the World Pancreatic Cancer Coalition since its inception. Great to have you here, Kerry.
Kerry McKean Kelly:
Thank you so much. Thanks for having me.
Alisyn Camerota:
I've been looking forward to talking to you. So tell us about where your journey began and how you became involved in pancreatic cancer advocacy.
Kerry McKean Kelly:
Yeah, well, you know, I think for a lot of us who are in this space advocating for better outcomes for this disease, I was inspired by loss. My husband Steve was diagnosed at stage IV. He was just 53 at the time. He really didn't have any of the risk factors of pancreatic cancer. And, you know, I used to tease him that he was the healthiest sick person I know.
He was a runner. He ate well. But as I've learned from this experience, and actually one of the physician researchers whose work we support, a lot of this is just random. You know, there are risk factors or environmental things that may influence a cancer diagnosis, but sometimes it's just random. And it can strike anyone at any age, of any gender, of any race.
And that's why this group advocacy is just so important.
Alisyn Camerota:
Kerry, your words so echo through my own experience. My husband was 56 when he was diagnosed with stage IV, and he was the healthiest 56-year-old anyone had ever seen. He worked out like a fiend. He never smoked. He didn't have a single gray hair. And it just feels like a lightning strike when something like that happens.
Kerry McKean Kelly:
I think when something like that happens and there is no sense to it, we seek avenues like advocacy to make sense out of something that is senseless to you, to make purpose around it. So, you know, I appreciate you being a host of PancChat and getting this conversation out there.
Alisyn Camerota:
Well, thank you, Kerry. And I feel the same way about you. And let me ask you the question that so many people ask me about that very thing, which is, isn't this hard for you? Isn't it triggering? Isn't it painful for you to have to go back over this subject matter again and again?
Kerry McKean Kelly:
No, it's not. I think when you've lost someone that you love, you're motivated by a couple of things. One is you don't want people to forget about them. But the other thing for me is Steve participated in two clinical trials when he was sick. One was a chemotherapy trial and one was an immunotherapy trial.
And he really believed. He really thought he knew that someday there is going to be that breakthrough patient. And he used to say, why not me? And sadly, it was not Steve. But we consider this work and Kelly's Heroes taking care of Steve's unfinished business.
Alisyn Camerota:
That is a great message. I think that's wonderful. Again, that resonates with me, and Tim felt the same way. When did your husband pass away?
Kerry McKean Kelly:
He passed away in April. Gosh, it's been ten years. So April of 2014. How soon after that did you start getting involved? You know, it wasn't on my radar because you're processing a lot of things. And it was actually a bunch of his buddies, you know, some from past jobs. Steve was a journalist.
He was an editor for the Philadelphia Inquirer for many years. So some of them were former colleagues and some were former college buddies. And they were the ones who came to me and they said, we want to do something about this. So thank you for the intro that I was a founder, but I have to emphasize I was a co-founder because we had a very good crew who brought this to life.
Alisyn Camerota:
Oh, that's great. That's really helpful. We'll talk about all that collaboration in a second. So tell me what it entails. Tell me what your work entails and what the goal is.
Kerry McKean Kelly:
Well, we're small. We're grassroots. And our focus is really on awareness, education, but especially education around clinical trials. You know, the standard of care is just not good enough against this disease. And when you get that gut punch, when you get that diagnosis, especially a stage IV diagnosis, you just crave, well, a couple things.
Hope, but also options. So much feels out of your control at that time. But when you go to an oncologist, when you go to an academic medical center, and you're presented options by way of clinical trials, it just gives you a little bit more opportunity, a little bit more hope against this disease. And we really want to create that awareness, but direct our fundraising toward those kind of opportunities.
Alisyn Camerota:
Yes, I totally agree. Clinical trials are the wave of the future. That's the way that they're going to save this. The standard of care, when my husband was diagnosed, the very first advice that I got from a woman who'd lost her husband years earlier was try to find somebody who doesn't rely on the standard of care. Try to find somebody who thinks outside the box.
Try to find clinical trials. Try to find something different because the standard of care hasn't made much progress. So that was very helpful for me to just set my sights there.
Kerry McKean Kelly:
We had a very similar incident and it was actually before Steve even had his formal diagnosis. He was getting a port put in for continuous chemo at that time. He was having a port put in and we were waiting for some scans, and the healthcare professional just said, be aggressive. Be aggressive. And that was really something that I think Steve carried with him.
Alisyn Camerota:
Yeah, that is good advice. So tell us, describe what collaboration looks like in your world in terms of fundraising and awareness.
Kerry McKean Kelly:
Yeah, so for Kelly's Heroes, like I said, we're small grassroots, but we like to say we're small but mighty. We're a 100 percent volunteer. We don't have paid staff. But we have a very committed group of not only on our board, but family members and friends and community members. And so they work very hard.
We have a couple major events a year that are main sources of fundraising, both of which are inspired by Steve. One is a St. Patrick's Day party that we used to host for many years here at our home, but then also a golf outing that, you know, reflects one of the things he liked to do with his pals. And it's just really been tremendous. Our board members have brought in such great sponsorship support.
And, you know, it's just really been tremendous to see the impact that, you know, something small can really grow into. It's very rewarding.
Alisyn Camerota:
Yeah, absolutely. So you've served, as I mentioned, as chair of the World Pancreatic Cancer Day Steering Committee. How many years have you done that?
Kerry McKean Kelly:
So I've chaired it for two years, and then my term is ending now. But I've been part of the committee, I think, since 2018. And it has been such a tremendous experience, you know, being kind of forced into this space. You know, I wouldn't have ever chosen to be in this position.
But once I was there, to be surrounded by this amazing coalition of advocates from around the world and being brought in and embraced and seeing the impact that we have together, it's really been fulfilling.
Alisyn Camerota:
So tell us about that. I mean, tell us what you do and what impact you've had.
Kerry McKean Kelly:
Yeah. So the World Pancreatic Cancer Coalition is a global collaboration of nonprofit advocacy groups from literally more than 100 countries on six continents. And it is amazing to see these organizations that, you know, in some ways might be competitors, but really coming together for the greater good.
We are all, you know, as we talked about, I think a lot of us are inspired or brought to this cause by loss, but now we're all inspired by hope. And when you put that together globally with this coalition, it's very powerful.
So for our committee specifically, our task each year is to plan the messaging, the campaign, the outreach around World Pancreatic Cancer Day, which we just celebrated November 20. And it's the energy around the entire month of November, but especially around that day, that is amazing to see.
I don't know if you all were on different social media or other feeds, but seeing that conversation just explode really around the globe is important. When Steve was first diagnosed, and that's twelve years ago now, people didn't talk to me about pancreatic cancer. I don't think people were comfortable talking about pancreatic cancer because it's just so grim.
And since then, in recent years, I have had so many conversations with people who will come up and tell a story of a loved one or a coworker or somebody that they know who had pancreatic cancer. I think that is a testament to this broader conversation that we are all having that makes it okay to talk about this disease.
And that is absolutely necessary because you can't care about something if you know nothing about it. So through work like this chat, through our organizations, and through the World Pancreatic Cancer Coalition, that very important conversation is happening.
Alisyn Camerota:
And just out of curiosity, do different countries do advocacy differently? I mean, do you have any stories of a different country doing something in a more unique way?
Kerry McKean Kelly:
Well, you know, globally, we do a lot of things like light up buildings purple and obviously wear purple and post purple and have people ask me why I'm wearing purple. I think, you know, I don't know that the advocacy is different, but I do think the patient experience is very different from one country to the next.
Some countries don't have as much access to resources and treatments and clinical trials. And so we really have to kind of create our messaging to patients who might be in different places with their illness and advocates who might not have the caliber of some of the healthcare opportunities that we may have here.
So that's a very important part of the conversation.
And one of the things that we try to do, and this is important globally, is to educate consumers to feel empowered, to ask questions of their providers, and to not have, you know, in some ways healthcare can be almost a paternalistic relationship. We want to make sure that the patient feels empowered with information that helps them ask the right questions.
Alisyn Camerota:
I think that's an excellent point because there's global advocacy and then there's personal advocacy, and success takes both. And I felt as I was going through this journey with my husband, because I'm a journalist and I ask questions for a living and I'm used to confronting powerful people, it wasn't that hard for me to spearhead this. But it's a very demanding part-time job, I would say.
Kerry McKean Kelly:
One of the things that we created from the committee is actually a patient guide, and it's just basically kind of like a one-page handout. We help them track their symptoms, a checklist: I have this, I have this, I have this. Think about some of their risk factors or whether they have any family members who had a form of cancer, other information that might be helpful for their provider, and then have them take that to their appointment.
So if they're not comfortable initiating that conversation or prompting those questions, they always have this tool that they can even hand to the physician. And so there are ways that within the committee, within the World Pancreatic Cancer Coalition, we really try to break through some of those things that might be cultural issues and help patients worldwide.
I have to say, we don't have our numbers yet for this year's World Pancreatic Cancer Day, but one of the things that is great is that our campaign materials are now translated into more than 20 languages. And last year, we had a reach of more than 10,000,000 people on World Pancreatic Cancer Day with all of the outreach. So we're looking to smash that record this year.
But it's really tremendous to see the reach and the impact.
Alisyn Camerota:
Congratulations. I mean, that's really a big deal. Well done.
Kerry McKean Kelly:
Thank you.
Alisyn Camerota:
Is there one thing that stands out to you or some things as meaningful progress that's been made in pancreatic cancer advocacy in recent years?
Kerry McKean Kelly:
Well, you know, here in the United States, and I can't speak to all of the numbers globally, but when my husband was diagnosed a little more than ten years ago, the five-year survival rate was eight percent. It's now thirteen percent. That's still way too low. We are not going to rest on that number. It needs to be better.
But if you think about that percent increase in ten or twelve years' time, that's a lot of people who are living longer, getting five more years to spend with their families, to be doing the things that they love, to be working, to be living their lives. So I think that is tremendous impact.
And then, as I mentioned, I do just think the fact that there are so many opportunities to have conversations and to reach people compared to the silence that used to surround this disease.
Alisyn Camerota:
Okay. So how can our listeners today get involved?
Kerry McKean Kelly:
Well, on the World Pancreatic Cancer Coalition site, we have a very easy-to-remember URL. Our campaign theme this year was Hello Pancreas, to introduce people to this important organ and the disease. And so people can go to www.hellopancreas.com.
On the website, there's a ton of information, but there's also a listing of all of the nonprofit advocacy groups that are part of the coalition. So no matter where you live, I think you'll find somebody like Kelly's Heroes or one of the other members nearby where you might have an opportunity to get involved.
Alisyn Camerota:
And what do you want our listeners to take away from our conversation today or to know?
Kerry McKean Kelly:
I want people to know that pancreatic cancer is one of the leading causes of cancer death. And we need more focus there. We need more awareness. We need more research funding. The standard of care and the treatments that are available are just not good enough.
But even more importantly, or perhaps just as importantly, there is no early detection test that can commonly be used against pancreatic cancer. So while you might be able to detect a lump or have a blood test, we don't have that for pancreatic cancer.
It's why so many people, like our husbands, are diagnosed at stage IV. And at that point, your opportunities for treatment are very limited.
Alisyn Camerota:
What other message, Kerry, do you want to get out?
Kerry McKean Kelly:
I think the other message that we want to get out there is that we want people to be educated, because when you are educated, you are empowered. If you are experiencing any of the symptoms, pursue answers.
A lot of times, people with this illness may take months to be diagnosed. The symptoms of pancreatic cancer very often mimic other kinds of illnesses. You might think it's a gallbladder or something else causing the pain, discomfort, or other symptoms.
But you know your body better than anybody. So if you are still feeling like you're experiencing these symptoms, if something is just not right, continue to advocate for yourself.
We're talking about group advocacy, but personal advocacy is as important as anything. We want people to feel empowered with this information.
Alisyn Camerota:
That's a really, really important message. Well, Kerry McKean Kelly, thank you so much for being here. Thanks for sharing your personal story and talking about the progress that you all are making.
Kerry McKean Kelly:
Thank you so much. We really appreciate it.
Alisyn Camerota:
And thanks again to Revolution Medicines, our sponsor, and thanks to all of you for listening. I'm Alisyn Camerota, and I'll see you next time.
Julie Fleshman:
Hi, I'm Julie Fleshman, President and CEO of PanCAN. If you or a loved one has been diagnosed with pancreatic cancer, navigating this journey can feel overwhelming, but you don't have to do it alone. Be sure to explore resources available to patients and caregivers through Let's Win and PanCAN.
You can find PanCAN at pancan.org and Let's Win at letswinpc.org. Together, Let's Win and PanCAN are committed to guiding you through every step of the pancreatic cancer journey, offering support, information, and hope.
In our next episode, we will be speaking with Diana Jupp, CEO of Pancreatic Cancer UK. Don't forget to follow PancChat to get new episodes delivered twice a month right in your podcast feed. PancChat is available on all major platforms wherever you get your podcasts.