Michael Osso, President & CEO of the Crohn’s & Colitis Foundation, shares how the organization is driving innovation and improving lives for millions.
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Show Notes:
In this Mission Matters episode, Adam Torres interviews Michael Osso, President and CEO of the Crohn’s & Colitis Foundation. They discuss the growing impact of IBD, advances in treatment, and how the foundation supports patients and accelerates research toward a cure.
About Crohn’s & Colitis Foundation
The Crohn’s & Colitis Foundation is the leading non-profit organization focused on both research and patient support for inflammatory bowel disease (IBD). The Foundation’s mission is to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life for the millions of Americans living with IBD. Our work is dramatically accelerating the research process through our database and investment initiatives; we also provide extensive educational resources for patients and their families, medical professionals, and the public.
Full Unedited Transcript
Hey, I’d like to welcome you to another episode of Mission Matters. My name is Adam Torres, and if you’d like to apply to be a guest on the show, just feel free to go over to mission matters.com and click on BR Guest to apply. All right, so today I have Michael Oso on the line, and he’s president and CEO over at Crohn’s and Colitis Foundation.
And just to let you know that. This particular interview is part of our Milken Global Conference coverage series where we bring you the best participants and attendees of the Milken Global Conference in Beverly Hills, California. Michael, welcome to the show. Thank you so much, Adam. It’s such a pleasure to be on.
I appreciate you having me. All right. So we got a lot to talk about today. I definitely wanna get into the Crohn’s and Colitis Foundation and, and IBD and you know, build some awareness around this topic. I have, some things to say about that and some stories to share. But first I wanna talk about the conference a little bit.
I understand this was your first time as a mm-hmm. As a conference goer. Like, like tell us about your experience. It was actually, thank you for asking. I have heard about the conference many times from many people over many years and never had an opportunity to attend until this past May. And it was incredible.
It was all the things that everyone had told me that it was, hmm. You know, there’s a healthcare track, which is, a logical way for me to spend my time at a conference like this. And I certainly attended lots of healthcare sessions and that was wonderful and informative and educational, but it also gave me an opportunity to dip my toe into all kinds of other subject matters.
That I wouldn’t normally have an opportunity to sit in the room with such incredible speakers and panelists mm-hmm. And really learn so much. So I felt spoiled and blessed. It was great. Yeah. Well I, I’m glad to hear that because it’s one of my, I like to call it like, it’s my super bowl of conferences that I go to every year.
Mm-hmm. I have a lot of fun. I get to meet amazing individuals such as yourself and other attendees. And I know we didn’t meet in person, but I’m happy that we get to do this interview because today’s topic is. That is actually pretty near and dear to my heart, so I’ll give some backstory that I don’t really get to talk about much on this show.
But so my mother mm-hmm. She actually suffered with Crohn’s for many, many years. Mm-hmm. And um, and I mean, I’m talking like 30, 40 years, something like that. Like, I think when she first got it, to my knowledge, they had a really. Hard time diagnosing it. They didn’t even know mm-hmm. Necessarily what it was 40 years ago in terms of when she, in the beginning, at least in her healthcare system or where she was at.
So it was it was a really tricky, and she battled that, you know, her entire life, she passed last year mm-hmm. Um, in those tornadoes in, Florida. But, so she wasn’t up from Crohn’s or from anything medical related, but she suffered with it throughout her lifetime. And she was one of those individuals who, spent a lot of time. She was a social worker, so she spent a lot of time filling out paperwork and other things like that and helping with the research that went into it. ’cause she was really good at paperwork from her, from working in those type of, in, that field. So she felt she was one of those people.
Mountains and mountains of paperwork. And just one quick story that I think you’ll fight kind of funny is she had a new doctor. I don’t know, this could have been 10 years ago, but I just remember the story. ’cause it was just one of those. Think she had a new doctor that she was assigned, and the doctor looks at her and he’s like, he has his eyes kind of picking.
She’s like, he explains to her that he knows everything about her case because she was in a medical book that he studied in school. So she about, she said, he said, I know everything. All of us did. We had to study you so. So I thought I was just cracking up, but I did incredible. I say that because I really appreciate the work that an organization like yours does because even just in building awareness, I know what, like later in her life, like as things were diagnosed better, as she was able to get on the right medications, as she was able to live with it later in her life she got her life back from those early years where, where she didn’t know, they didn’t know.
Exactly what was going on with her in the beginning. So it was just, and it’s through organizations that, you know, were helping her. So I know it’s a long setup, but I just wanted you to know that. Yeah. I appreciate your work and, what in the work that you’re doing over at the Crohn’s and Colitis Foundation.
So so thank you. Mm-hmm. Yeah. Well first of all, thank you Adam. I, really appreciate you opening up and sharing all that information. It’s so helpful for me to hear patient stories and, and caregiver stories. Mm-hmm. Right? The people who love those patients. But I have to start by saying that I, you know, I’m sorry for your loss.
I lost my own mother many years ago, and you know, it’s a very difficult thing. And I’m also sorry that she struggled for so long with Crohn’s disease, but that is the reality unfortunately, of these diseases. They are chronic diseases and they are lifelong right now because we do not have cures for them.
And we also lived in a period of time, your mom, where we went from, we don’t. Have any deep understanding of this disease or any way to treat it? Yeah, and the reality today, which is that we have some good drugs that are now on the market. We have a good approach for managing some of the symptoms. We are not there yet.
We still do not have cures for these diseases, and we don’t have any great drugs on the market, but we are making enormous progress and that certainly happened in her lifetime. So, yeah, I appreciate you sharing. Let’s go. Thank you. And I wanted to maybe take a step back ’cause , I don’t wanna assume that people, obviously you and I know and I know because of my mother, but a little , about Crohn’s , and even what the colitis side of things and, and just IBD in general.
maybe let’s start there with just a primer. Could you maybe give a little bit of an overview? So for those that haven’t quite been affected by this or hasn’t touched their lives. Yeah, appreciate that opportunity. And as I already mentioned, these are chronic diseases and right now they’re lifelong, so there’s, no known cure for them, and they basically characterized as.
Diseases that involve inflammation inside your gastrointestinal tract. And that’s true for Crohn’s disease, which can happen anywhere from, we like to say gum to bum, so anywhere, you know? Mm-hmm. Anywhere along your GI tract. You can have Crohn’s disease and ulcerative colitis, which is very much related to it, but is.
Focus pretty exclusively on the colon, your large intestine. So that’s essentially how the diseases are characterized and the symptoms of those diseases can be many, for lots of people it involves abdominal pain and diarrhea. But some people have what we call extraintestinal. Symptoms from the disease.
So anywhere from eye issues to joint pain, to liver complications. So the diseases can be varied in terms of symptom and can run the gamut from relatively mild disease for some people up to very severe disease in the, in their lifetime. And I don’t know if your mom was one of these people, but mm-hmm.
Folks with Crohn’s disease. Roughly 70% of them , will require surgery at some point. And their attorney, and often they took her intestine. Yeah, they took some of her intestine out at one point and she was probably looking at it. She went into her seventies getting worse at some point and more surgeries.
Mm-hmm. Absolutely. What? Mm-hmm. Yeah. No, that’s exactly right. So your mom is not unusual, unfortunately, for our patients.
So that gives people a rough sense for what the diseases are. Yeah. And I wanna get into also the work at the foundation and, maybe a little bit of background there and what, you know, led you to join the foundation. Yeah. So maybe just a, a quick summary of, of me mm-hmm. And who I am. I, went to the Wharton School, studied business with the intention of, you know, entering the world of for-profit.
, Some element of the for-profit sector. And during my time there and a bunch of summer internships and some experiences with nonprofits, I realized I wasn’t gonna go that route. So I’ve spent my whole career in nonprofit management. First at cultural organizations and educational organizations, and about 20 years ago.
I devoted my career to nonprofit health organizations. Wow. And I’ve been at the Crohn’s Foundation now for about 12 years. I say this all the time. It’s by far the best and most rewarding and compelling job I’ve ever had. I feel fortunate to be in a role where I can help shape the direction of the organization and what happens in the community.
Mm-hmm. What we aim to do as an organization is to fulfill our mission, and our mission is twofold. We wanna cure the diseases, Crohn’s and colitis, but we also need to improve the quality of life of children and adults that are affected by the diseases because as they said, there are lifelong. So as we’re searching for a cure, our patients need a ton of support, education, emotional support.
We need to advocate for important public policy to improve their lives. As I just mentioned, this is a disease of children and adults. About 25% of people are first diagnosed with Crohn’s colitis when they are children or very young adults. Wow. So that’s a lot. Wow. That’s, I had no idea that it started that young.
Wow. And that could be debil debilitating, like for kids like to like that, you know that. Wow, that’s, I didn’t know that. Yeah. And as you are pointing out, it’s debilitating not just physically, but emotionally and psychologically, right? Mm-hmm. And especially for the youngest and most vulnerable among us.
Yeah. Yeah. I mean, kids can be diagnosed as, as young as six months old. Wow. So it really runs gamut. So, yeah. We have one year olds and 91 year olds that are being diagnosed with these diseases, so Mm mm Yeah. But great work is happening at the organization and in the community. Mm-hmm. As I mentioned when we were talking about your mom, the, the world has changed dramatically for the better.
Yeah. And there are many treatments on the market right now, and the Crohn’s and Pitis Foundation has played a critical role in every single major breakthrough in the space and advancement to the drugs that we have today. In, in every case, we were funding some early basic science. To uncover the necessary foundational knowledge to advance to the drugs that are in the market today.
So we’re proud of that. We’ve been around for 50 plus years and playing a critical role, I think, in advancing everything that’s happening in the space. Hmm. That’s, so, that’s, so that’s amazing. And I do wanna get into just some of the some of the ways, like how do people get involved? Like when, a lot of times when people come on this show, like they may have been affected like, like myself where they had a family member mm-hmm.
Or otherwise, or other people don’t even know, , like how do people get involved? Like what is the foundation or organization need? It’s a great question, Adam. Thank you for asking it. And the short answer is there are lots of different ways for people to get engaged. I should start by saying that, you know, we are a patient advocacy organization.
We take our directive from the patient community, so we involve patients and their caregivers in every aspect of the business, whether it’s helping us. Shape and create new education programs or help build our next strategic plan or help review applications for new research programs. We involve patients everywhere.
Those are certainly ways that people can get involved, but there’s also all kinds of community activities. We do a big walk-a-thon in every major city across the country every year, and lots of people join the organization. First learn about the organization by joining that walk-a-thon. We call it take steps.
Most of it happens in the spring. You know, we host. Golf outings and galas and luncheons all across the country. But we also host education programs all across the country. Both live education and online education. And those are good ways for people to first discover and get involved in the organization.
All of that information, all of the ways that people can learn from and help advance the mission of our organization. Can all be found on our website. So I always encourage people to visit that site first so you can get a sense for all the many things that we do. The, the URL for the website is crohn’s colitis foundation.org.
And you know, I hope that people can find the information that they want and the way that they might get involved. Amazing. And I’m curious in terms of just where we stand, where we’re at with the disease now, like what, well, what you can comment for like where are we at with it now? Like you mentioned, there’s a lot of, there’s medicines to be able to treat it, but like any breakthroughs mm-hmm.
There just anything that you care to comment on, on trends you’re following in the space. ’cause you have a, you have a very unique you have just a very unique vantage point because you’re working on this day in and day out and you’re part of such a large organization. Mm-hmm. Yeah, I think I can say this very objectively.
We’ve been around for 50 plus years. The first 40 of those years, the. Field struggled to treat the disease and advance to better treatments, but what has happened in the last 10 years is dramatic. There is now a very full toolkit of treatments and approaches. To help manage the symptoms of the disease, and that’s an important thing for the audience to understand.
As I said before, there are no cures, but we also don’t even have drugs that treat the actual disease. It’s treating essentially the symptoms of the disease. Mm-hmm. But what is gonna happen in this next 10 years, because I, I’m telling you, the pipeline of new discoveries is so full and so rich, and that’s large pharmaceutical companies and smaller biotech and startup companies, not just all over the United States, but all over the world.
There’s a ton of interest and investment and excitement about things that are coming down the pike. And I. Over the next 10 years, you’re gonna see this space transform for the, for the benefit of patients. And I look forward to having a front row seat to it all. That’s amazing. Do we know roughly how, how many people we feel are affected or touched by this?
I. Yeah. In the United States, our estimate is a, is one in a hundred Americans is battling Wow. Some form of inflammatory bowel disease. And that’s roughly between two and a half and 3 million people in this country. Mm-hmm. And many more million of around the world. Yes, of course. Wow. So likely. Well, Michael, your audience knows someone with the disease.
Yeah. For sure, for sure. I completely agree with that. Michael, this has been great having you on the show today and getting some updates and what’s going on in your space and and also of course, from your, you attending the Milken conference. Hope, hope to see you there next year again. Like it’s yeah, I don’t miss it.
I go every year. I love it. It’s, always on my calendar as soon as they announce the next one. So that being said, Michael, I know you left it once, but I know some people are driving in their cars, they’re in the gym. They didn’t quite get it. What’s that website again? So people can, go check it out.
Absolutely. I just wanna say that the name of the organization is Crohn’s and Colitis Foundation, but we don’t have the, and in our URL, so our URL is just Crohn’s, C-R-O-H-N-S colitis Perfect. So come visit, we’d wonderful. Love to have you. Mm-hmm. Perfect. And for everybody watching, just so you know, we’ll definitely put the links to the, to the website in the show notes, so you can just click on it and head right on over.
And speaking of the audience, if this is your first time with Mission Matters and you haven’t done it yet, hit that subscribe or follow button. This is a daily show. Each and every day we’re bringing you new content, new ideas, and hopefully new inspiration to help you along the way in your journey as well.
So again, hit that subscribe or follow button. And Michael, thanks again for coming on the show. Thank you, Adam. You’re doing great work here. I love it. Appreciate being with you.
