Banking on KC – Matt Anthony of Head for the Cure Foundation: Defeating Cancer Step by Step
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Full Transcript:
Kelly Scanlon:
Welcome to Banking on KC. I'm your host, Kelly Scanlon. Thank you for joining us. With us on this episode is Matt Anthony, the chairman emeritus of VML, but today he's here to talk with us about an organization he founded called the Head for the Cure Foundation, which has their annual 5K coming up next week. Welcome, Matt.
Matt Anthony:
Great to be here, Kelly. Thanks for having me.
Kelly Scanlon:
Tell us briefly about the mission of Head for the Cure.
Matt Anthony:
We exist to support patients, caregivers, loved ones facing brain tumors of all types, but especially brain cancer. Our motto is simple. Our goal is to defeat brain cancer step-by-step, and we do that by building awareness, raising funds, and igniting hope for this community of people facing this unwanted and unexpected challenge.
Kelly Scanlon:
Yeah, and key word there is so often it's unexpected.
Matt Anthony:
Oh, my gosh. I think most things that disease oriented encounters in life along the journey are unexpected. Some seem more so, and in the case of a brain tumor and especially malignant brain tumor, brain cancer, it doesn't discriminate. It hits people of all ages, young and old. In fact, pediatric brain cancer, sadly, is now the number one cancer killer of kids. So it's quite amazing, Leukemia has been largely eradicated. And so something had to creep to the top, unfortunately, and that's been brain cancer. But back to the point of the non-discrimination, it does affect all ages, all genders, all races. There are some stats that lean in a particular way and it's not driven by behavior. Whereas some cancers, heart disease is often triggered by the way one might live, that's not the case with brain cancer. So that's part of the ongoing discovery. To try to solve the problem, you have to understand the problem.
Kelly Scanlon:
I'm really curious, I think most of our listeners would probably recognize you from the way I introduced you, your association with VML and marketing here in Kansas City. You're an icon in that regard. Why did you decide to found the Head for the Cure Foundation?
Matt Anthony:
Yeah. Well, once again, in that unexpected point, I think people that face something in their family or personally, that again, is unexpected, you want to do something. And in my case, my brother Chris, who actually worked for us at VML, we had an office in Dallas at the time. Chris was the general manager of our Dallas office. He was up in Kansas City for a meeting and not feeling well. I think I told him then that, "Gosh, Chris, we don't have any sick days here at VML." Tongue in cheek, but when your brother works with you and the Thompsons, know what that's about, you tend to push a little harder. But it turned out Chris was sick. He went home back to Dallas that weekend. He had a seizure, went to ER. On Monday, he was diagnosed with the brain tumor. On Tuesday, he had surgery, and the diagnosis was a glioblastoma, which is stage four brain cancer.
He was 34 years old. So working for me, for our company at VML in Dallas, Chris lived for two years, which was longer than expected with a glioblastoma at that time and still has a low survival rate. He was extraordinary, because he lived so ordinary. He chose to live his life with his disease as he did the day before he was given the diagnosis. Two young kids, he worked every day that he could, and it was really his idea. A few months before he passed, he and I were on a short bike ride and he said, "Hey, we should start a 5K." This disease is, I had never heard of it before I learned I was facing it. So we need awareness and man, if you can raise a few bucks, maybe we can plow it back into research. And so I said, "That's a great idea, let's do that."
Well, unfortunately, he died a few months later, but his wife, Kirsten, my family, and our VML family said, "We're going to do this." So that first year in October of '03, we held our first 5K in Corporate Woods. Had about 300 people and raised $25,000. It was a great... We thought we crushed it. And so much, let's do it again next year. And I remember that first event, my math won't quite be right, but let's say 100 of them are family in connection to family. Probably 120 were VMLers and their families, and then a smattering of 100 other runners and walkers. And so that sort became the path forward. And for the first four or five years, Kelly, we were plowing ahead with our Kansas City event. I should say, when we first conceived of the 5K, we didn't know how to put on a 5K.
My wife Ann and I had been regulars in the Amy Thompson Run for Daylight that the Thompson family put forward and Country Club really helped drive forward. And we ran in it and VML sponsored every year. So I'm going to call Paul and say, "How'd you put on a 5K?" And I think he said, "Well, I didn't have anything to do with it, but we spread it around the family every year." But it was a great source of energy and community, which has been such an important part of building Head of the Cure. And it's why I think Country Club's such an important part of our relationship. But so for five years we built it in Kansas City, grew it every year.
Kelly Scanlon:
Very organically.
Matt Anthony:
Very organically, yes.
Kelly Scanlon:
You weren't even a foundation yet at that time, were you?
Matt Anthony:
We were not a foundation, very true. We ran everything through the VML Foundation. We had our own foundation at VML, and we were directing the funds initially through the Chris Anthony Brain Tumor Research Fund set up at MD Anderson Cancer Center in Houston, which is where Chris was treated. The promise was that we would direct the money to research. So with MD Anderson's help, we drove that. And that's really where things really started to take hold. After about five years, I'd gotten fairly close to Mark Gilbert, who was Chris's doctor, the number two head of neuro-oncology at MD Anderson, flew to Houston, met Mark, said, "Okay, what are we going to do with this money?" We are now up to about half a million dollars. And Mark said, "We're MD Anderson, the largest cancer center in the country, and really the world, but yet this disease, elusive requires the collaboration, which is true in anything of the top docs at other centers."
And Mark Gilbert, Dr. Mark Gilbert said, "I do that organically. So my friend Jeff Raizer at Northwestern and Vinay Puduvalli at Ohio State and the folks at Cedars-Sinai, we have this informal collaboration, but I love for this money to help establish a real structure, an infrastructure, and so I need your help to put it together. So at that meeting, we hatched the Brain Tumor Trials Collaborative, that Head for the Cure would fund. Initially six centers, academic cancer centers, and it grew. It's now 32 of the top academic cancer centers in the country, including KU Cancer Center.
Kelly Scanlon:
That's incredible. Just a little over 20 years, all this has happened.
Matt Anthony:
Yeah, and that was also then Kelly. Okay, so now that we have this structure and we have a path forward for where the funding will go, we can begin to expand into other cities through these partnerships, these member academic cancer centers in Dallas, in Detroit, in Orlando, in New York City. And so that was how we began to expand from city to city to today where we're in 25 cities.
Kelly Scanlon:
You've already talked a little bit about how this kind of cancer does not discriminate that whatever age, gender, race, but the awareness is often lacking. So what are some of your biggest challenges in building the awareness and support? Obviously the 5K that you have started generates lots of support, but in general, what do you do to create awareness and support for brain cancer?
Matt Anthony:
It's difficult in rare cancers and well, there are cancers that are more rare than brain cancer, but it's not, it's funny to talk about it this way, but breast cancer, colorectal cancer, lung cancer that affect a much larger universe of people, of course also get the most funding. There is that linear relationship between awareness, scale, and funding, grassroots and then NIH funding, actual government funding. And also the diseases that have low survival rates, there is often a stigma associated with that. If people succumb to the disease before there's an opportunity to see progress, that also minimizes the awareness. So the first thing is you have to create community and the like-mindedness of people that are facing this disease. And yes, we use our events... We've always believed that the celebration, the positivity, the energy, the uplifting piece is really important. And I think the other thing I realized is that the universe of people affected by a very specific cancer is a certain number.
So when asked, "So how many people are affected by brain cancer every year?" The answer you might give is, well, there are 16,000 newly diagnosed malignant brain tumors every year. There are 700,000 people living with a brain tumor. Those are accurate numbers, but it's not the answer to the question, how many people are affected by brain cancer? It's the multiplier of caregivers, family, other loved ones, coworkers, everyone. It's quite remarkable. And I think we've recognized that and have [inaudible 00:09:16]. So by building a community, not just around the patients, but around all those affected, and a great example, we use a fairly typical fundraising playbook through five cases to have team development. So we team fundraise. In the Kansas City event this weekend for example, we'll have close to 200 teams, five to 6,000 participants. Those teams will range from three or four up to teams like Burton Strong, Doug Burton, a KU Doctor, and in Team Little Owl.
Team Little Owl over 12 years, Allie Fisher at four years old, succumbed to her DIPG tumor, her family, Kelly, Kyle, and Evie started a team at Head for the Cure 12 years ago. They will have, again, between four and 500 people on their team. So how many people are affected by a brain tumor in Allie Fisher, Little Owl's case? A few thousand. And that helps build the awareness, but it's also the center of community, which is really what brings people peace and allows them to keep going, brings them support. It's not just when the patient is undergoing treatment, it's their entire life. And so at every year, whether it's supporting the survivors or providing a vessel of remembrance for those legacies, we do all those things.
Kelly Scanlon:
In addition to the research that you've talked about, what are the means of direct support and resources that Head for the Cure provides not just the patients, those with cancer, both to the families as well?
Matt Anthony:
This is something we've evolved over the years. In the early years, Kelly, the promise I guess, that I made to my brother and that we thought it was, we're going to put every dollar we raise into research because clinical trials, research-based clinical trials are the path to ultimately solve the problem. And that's very true. That continues to be an important part of our fundraising. I think we also realize that that's the tomorrow to what we do, but there's always the today. How do we help patients, caregivers, loved ones today? And so over the past few years, we've been implementing programs, education, advocacy that help those patients today, including of course support groups. We do monthly support group online, nationwide, called Patient Perspectives. And that's facilitated by one of our staffers, Courtney Watson, who runs our program. She's been with us for seven years. Courtney lost her mother to a glioblastoma and first year she had a team at the Kansas City event, and next year she applied for a job and she's been with us ever since. But facilitating is really just allowing people to talk-
Kelly Scanlon:
Is this like a Zoom type of-
Matt Anthony:
It's a Zoom, yeah. So we started during COVID and it's continued. Then we have a second one called Caregiver Conversations. The number of people vary. We encourage folks to sign up and some want to just listen. So those have been terrific. We also, a few years ago, launched a patient navigator called Brains for the Cure. So our organization is Head for the Cure, Brains for the Cure is a navigator that allows patients and caregivers to go into this online environment. We have about 400 videos from patients, caregivers, doctors, social workers, nurses, talking about various subjects from how do I pursue second opinion? To what could I expect in standard of care? To how do I talk to coworkers?
Kelly Scanlon:
Equips you to navigate this new world they've suddenly had thrust upon them.
Matt Anthony:
Absolutely. It's a journey you're not expecting, again. So coping, managing a really important point, and we've created it in a very human way. It's a nonclinical kind of environment. We've just optimized that. Just recently launched a companion tool on Brains for the Cure called Join Your Path to Hope. This is a personalized version. So we've created an environment that allows visitors to answer between seven and 10 questions to personalize their situation. When facing brain cancer, we've discovered three parallel tracks that happen in one's life. The first is, as your disease progresses, there are gates you go through, could be surgery into initial treatment, recurrence of tumor, but as the disease progresses, Kelly, the psychological impact is dramatic and also changes. What happens emotionally to a patient, to a caregiver? And then thirdly, the relational aspect. How do I talk to my kids? What does this mean at work?
Join Your Path to Hope allows a patient or caregiver to answer these questions and we'll present content unique to their situation across those three tracks of the medical journey, the emotional journey, the relational journey. So it's quite unique. You also have an ambassador program, which we have a group of people that volunteers that are accessible to patients who want to have one-on-ones who want to pursue second opinions, who just want a like-minded... So if a mom in Florida at 40 years old has a child, a pediatric brain tumor patient, she wants to talk to another mom who's facing the same thing she is. So we're building a program now to make those people available to others.
Kelly Scanlon:
How is it that you measure your impact? How do you know whether your initiatives are having the success you hope that they're having?
Matt Anthony:
That is a great question and my career in business, of course, everything is measured by client retention and profitability. And campaign has an ROI, and I'm wired that way. In a disease-based nonprofit where the path forward is uncertain, the metrics are different. And I've had to adjust that. Raising money that can put to work in funding clinical trials, in running our own programs, I believe though more than anything is every day we know we're helping people. And I'm quite fulfilled by knowing that truth. I will tell you, Kelly, that there's discouragement with, gosh darn it, we've been doing this a long time and there's not yet a cure for malignant brain cancer, for malignant brain tumors, brain cancer, glioblastoma especially, DIPG especially, childhood brain cancer.
And you can even say that the progress, the lifespan is incremental. So it may have increased from 13 months to 18 months on a median basis. But then you think about it, but that's not insignificant because you're creating memories with every new day. And so I'm mostly encouraged, I'm encouraged that our events are a community that convenes like-minded people, that by experiencing a Head for the Cure event, they know they're not alone. And that is so fulfilling.
Kelly Scanlon:
And you may not get the hard data that you're used to with advertising and marketing, but you get the anecdotal stories and as you say, they carry you, you're making a difference in lives.
Matt Anthony:
When people tell and we'll hear it this weekend, so many times that this is my favorite day of the year. And it is because for families that are there in remembrance, it becomes a reunion. And that's true with my own family. My brother Chris, who's there present, he died over 20 years ago, but he's present so much, and that's true with so many people. So that is probably the most important metric is we're providing a vessel where people feel they're supported and they aren't alone. And yes, funds raised go to help others. They fund our programs, our events themselves are our most important program.
Kelly Scanlon:
Let's talk about that event. It's coming up in just a few days here. You're expecting five to 6,000 participants you said, but is there anything about this particular race that you'd like to share? Do you need any more volunteers, any more participants?
Matt Anthony:
Check us out. It's not too late to register, headforthecure.org/kc. We take all comers, whether you're a runner or a walker, we certainly will take more volunteers, because it's a big event. It's quite remarkable that the Metro KC Head for the Cure event is now the largest charity 5K in the metro and has been for a few years now. It's also the longest running charity 5K. Just to this event alone, we've raised close to $10 million over the years and have had close to 100,000 people that have come through. So it's amazing for a rare disease to have that kind of support.
And we were grateful to everybody who's supported us every year, including, we have a few sponsors, VML and Country Club are the only ones that are sponsors every single year. So thank you. So this is year 22. So there have been other runs, walks that have evolved a bit, a trolley run that's still, that's going on in the marathon, but those are not direct charity oriented nonprofit 5Ks. So we're proud of that, but it will be a party. We have an amazing kid zone. Bring the kids out.
Kelly Scanlon:
This is all out at Corporate Woods?
Matt Anthony:
It's out of Corporate Woods. Yeah, it's great. So building 40, great music, great food, thanks to a lot of donors, including Price Chopper who donates everything, lots of really generous people so that the funds we raised can be pushed back to support KU Cancer Center, the Brain Tumor Clinic, Children's Mercy Hospital here, the Brain Tumor Trust Collaborative, our national organization. So we're pretty efficient to make sure that the funds we raise, we maintain that balance sheet and are able to plow the money back to the organizations we serve.
Kelly Scanlon:
Looking ahead, what are your long-term goals for Head for the Cure, and are there any new initiatives that we can expect?
Matt Anthony:
The long-term goals, we say, and it's been our tagline for many years, defeating brain cancer step-by-step. That is aspirational. I'm not going to say that the long-term goal is to fund a cure for this disease because it's sort of out of our reach, not out of reach, but we contribute to that. I think I've recognize too a nonprofit that especially disease oriented, there are three legs of the stool. The science, the docs, and the researchers, they occupy one leg of the stool. The pharma companies, the device companies, those companies have to work with them to move trials forward. One feeds the other. And the third is what we do. The organizations that convene the community, that bring them together, that provide advocacy and the education. None of the good things that ultimately get solved happen without the collaboration of each of those three, the three legs of the stool.
So what's the long-term goal? To continue to be relevant to this community, continue to be available to this community. We're seeing new progress every year, Kelly, there are new trials that have promise. There's the segmentation of tumor types, that there are certain types of malignant brain cancers, brain tumors that are progressing more rapidly that do have longer term survival rates. There are new therapies, immunotherapies, especially vaccines on the horizon. The other thing is we realize long ago, I'm an ad guy who runs a nonprofit. I'm not a doctor, but we have great, great physician partners that we're very close to and they look ahead for the year. We have incredible relationships with our physician partners who connect with patients, and that's really powerful. Long-term, of course, we want to continue to grow. We want to add new cities, which will add new revenue, which will add more people that we're going to support and help.
And as we do that, then we make a bigger impact. So I want to grow the impact for sure. And with that, new initiatives, one in particular that we want to move forward in is more legislative advocacy. That's important, that funding through the NIH and helping legislators of all dimensions, of all size, of all colors understand it is the rare cancers, those that have not been solved, that are ultimately going to solve cancer, that are ultimately going to provide better healthcare for our country. So you know that you can contribute to that by staying energized. But that is a very specific thing that we want to pursue next year, is how can we put a true advocacy that helps to better educate the people that make decisions, funding decisions at a higher level. You can't expect everybody to know everything. You have to know enough to share enough so that the people who can make decisions can ask the right questions and then ultimately make an impact.
Kelly Scanlon:
That's so very true. John, best of luck on this upcoming race. I hope you get a lot, even more than the five or 6,000 that you already have in the next couple of days. And just for all the good work that you're doing, again, headforthecure.org. Go out there and sign up if you have some time this weekend to participate in that. And we just really appreciate you coming on here to Banking on KC and telling your story and all the progress that is being made.
Matt Anthony:
Well, thanks to one little [plug] for Country Club Bank. I've banked with this bank all my adult life. And when we started this foundation, we needed a bank that could help us grow. And so the $30 million we've raised since we've started, it's all passed through Country Club Bank.
Kelly Scanlon:
Another community bank. You talk about community. But thank you so much, Matt. We appreciate it.
Matt Anthony:
Thank you. Thank you.
Joe Close:
This is Joe Close, president of Country Club. Bank. Thank you to Matt Anthony for being our guest on this episode of Banking on KC. The Head for the Cure Foundation has had an incredible impact on raising awareness and funds for brain cancer. Their commitment to supporting patients and families, funding critical research, and fostering hope has created a collaborative, impactful network that stretches well beyond Kansas City into dozens of cities across the US. Country Club Bank is proud to have been a sponsor of the Head for the Cure 5K since its inception. Supporting such a vital cause aligns with our commitment to the health and wellbeing of our community, reflecting our belief in making a meaningful difference in the lives of others. Thanks for tuning in this week. We're banking on new Kansas City. Country Club Bank, member FDIC.