The Inside Story of the Year of the Zebra Campaign - Shiv Gaglani, Co-Founder of Osmosis from Elsevier


We’re turning the tables on Raise the Line co-host Shiv Gaglani today who will be answering questions, instead of asking them, about Osmosis from Elsevier’s Year of the Zebra campaign. As Shiv explains to host Michael Carrese, he first became interested in rare diseases meeting patients as a medical student at Johns Hopkins University a decade ago. His discomfort with the standard advice given to medical students to think of horses (the common condition) and not zebras (the rare condition) when determining a diagnosis sparked an interest in learning more. In the ensuing years he created a partnership between Osmosis and NORD, one of the leading rare disease organizations in the world. One result of that relationship is 200 Osmosis educational videos on rare conditions which provide critically needed information to health students, providers and patients. He has also sought out rare disease patients and parents of children with rare conditions to find out what more could be done to help them. “The more of them I've met, the more inspired I am by their stories and the things they've done as community organizers, researchers, scientists, advocates and policy changemakers.” Don’t miss this lively conversation about the components of the campaign - including Elsevier’s new open access journal on rare diseases - and how you can get involved. And, you won’t want to miss Shiv’s recounting of his climb of Mt. Kilimanjaro to raise money for the campaign, including the special photo taken at the summit. Mentioned in this episode: www.osmosis.org/zebra





Michael Carrese: Hi everybody, I'm Michael Carrese. In some ways, this is going to be a normal episode in that you'll be hearing from Osmosis’ co-founder and Raise the Line host, Shiv Gaglani, but instead of asking the questions today, he's gonna be answering them. Regular listeners may have noticed, actually, that Shiv has not been hosting the podcast quite as much recently due in part to his work to launch the Year of the Zebra campaign to boost awareness of rare diseases, which included climbing Mount Kilimanjaro in February. 


He’s going to give us the back story and details on the Year of the Zebra campaign today including information on how you can get involved. So, Shiv, it’s great to be with you and I want to note that out of the 360 guests we've had on this show, you were the hardest one to schedule.


Shiv Gaglani: Well, thank you, Michael. Obviously, it's a nice full-circle moment. It's been really fun to be on the other side, and so hopefully you won't grill me too hard on this side as a guest. 


Michael Carrese: Well, speaking of that, I do wanna start with kind of a tough question that's been on my mind for three years -- and I think our audience deserves an answer -- which is, if you were an animal, what kind of animal would you be? 


Shiv Gaglani: (laughs) Well, it's funny, because zebras are top of mind right now, so that's the obvious. 


Michael Carrese: Ah! I thought you would say zebra!


Shiv Gaglani: That's the obvious answer, but no, I will say what I actually say when I'm asked that question, which is a hawk. I really like hawks for several reasons, but one is obviously they fly. Like, that's amazing to get that bird's eye view and sometimes when you see birds, they look like they're just having a lot of fun. Number two is I actually went falconing with a hawk last year and got to get up close and personal with one, and they're incredible. 


They tell you about focus and how they are able to see things that no other birds can see. They can go really fast and capture their prey -- or, you know, in my case, maybe launch an initiative or a company -- but then they also rest. It's funny because they're also super goofy when they walk. If you ever see a hawk walk, they're really goofy. I like that playfulness where they aren't good at everything. They're really good at one thing, and then they kind of suck at the other things, and that keeps you grounded.


Michael Carrese:  So, do you think this parallels you? Like, what is it that you suck at? I haven't heard anything along those lines. 


Shiv Gaglani: I suck at so much. I think it's good to do things you stink at because it keeps you humble, keeps you learning, and also when you suck at something, you can truly be playful. I mean, right now I'm worried because I've done so many of these interviews on both sides, actually, that I'm sort of known to be able to do this stuff. So, the performance anxiety is there even though I've done it so many times, versus if someone gave me a guitar, I know I can't play guitar so I might as well just pluck around and play with it.


Michael Carrese: Yeah. Talk about the view, though. I don't want to go too deep into the hawk thing, but what is it that you like about that? 


Shiv Gaglani: I think perspective. I tend to love anything that improves my perspective, both from a high level -- like seeing two, three, four steps ahead, or at 30,000 feet...there's so many analogies. Hawks have this combination of being able to see broad perspectives from flying at 10,000 or 20,000 feet, but then also seeing in real detail because in order to dive bomb and capture whatever they're trying to capture -- like a mouse or something -- they have to be super detail-oriented. 


Then, if we want to continue the analogy -- you've heard this on Raise the Line many times -- we talk about going where the puck is headed when training clinicians of the future. Clearly, hawks are able to anticipate which way their prey will move, and obviously, it's a valid analogy because they're animals and they hunt. But in general, when we launch an initiative or a company or something, you're not only thinking, “What's the current state that has to be solved, but where are things going, and is this going to be something that's worthwhile doing for a couple months or a couple years?” 


Michael Carrese: So what is your prey? What are you hoping to capture? 


Shiv Gaglani: You know, that changes over time, but the commonality between everything I've done pretty much for the past decade has been something in healthcare or something in education, or obviously in the case of Osmosis, in both. So, how I like to summarize it is to say I like to create scalable solutions in the fields of healthcare and or education. 


Michael Carrese: Well, that’s a good way to put it. So, Year of the Zebra is a major educational campaign from Osmosis and Elsevier to put the spotlight on rare diseases. But this really all started back in the fall when you were starting to book guests on the podcast who had rare diseases or the parents of kids with rare diseases, and I'm just curious about how this all came about. How'd you get so interested in it? 


Shiv Gaglani: It actually goes way back from my personal interest to when I first started medical school at Hopkins, which was 2011 to 2013. I have pretty much famously talked about how lectures annoyed me a lot because they were really slow. My professors were great clinicians and researchers, but most of them weren't trained to be teachers. There were a couple of rare exceptions. The only exception for the lecture hall classes that I really liked -- and many of my classmates liked -- were the clinical experiences where we had patients come in. 


Many of these patients had rare conditions, so we had a cystic fibrosis patient panel, we had a phenylketonuria patient panel. We saw these patients who were just like us. Many of them were young, in their early twenties like most of the med school class, talking about their daily challenges. Whether it was people with phenylketonuria talking about what they could eat and if they didn't eat the right thing, how that would impact them; or whether it was cystic fibrosis patients who at the time were not expected to live into their twenties, let alone thirties. They also had a lot of physical therapy and respiratory therapy growing up. And so, it gave me a deep interest in their conditions. That was juxtaposed with the advice of “when you hear hoofbeats, think horses, not zebras. So, it was kind of weird to meet these patients, but then to also hear, “don't think cystic fibrosis when someone comes in with a lung complaint.” So, I had that interest for a while. 


At the American Medical Student Association a couple of years later, while I was working full-time on Osmosis, I met the National Organization for Rare Disorders, which was also exhibiting just like Osmosis was. I pitched them this idea of creating Osmosis-type videos on rare diseases. That was the first kind of partnership we created in that space. Since then, we've been dripping out these videos, getting to know these patients and these groups. You've met a number of them out through Raise the Line, like Suzanne Peek of the National MALS Foundation, Tom Rebbecchi of the Glut1Deficiency Foundation, and similar folks. 


The more of them I've met, the more inspired I am by their stories and the things they've done, not only as patients or parents or family members of loved ones with these conditions, but also as community organizers, as researchers, as scientists, as advocates as policy change makers. 

For example, Philippe Pakter trying to change the whole EU's policy around healthcare across borders. So I’m really inspired by them, and I think it just built from there.  I think anybody who's spent as much time with rare disease parents and patients as we've done will get passionate about this, but I think if you just spend enough time in any field, you're gonna find something that makes you passionate, and certainly that's the case here with the zebras. 


And then one last thing I'll share for you is having these themed years or themed times of your life -- like making this the Year of the Zebra -- is very cool. I own more zebra swag than I ever thought I would. 


Michael Carrese: (laughs) Including a zebra suit. 


Shiv Gaglani: (laughs) A zebra onesie, which has taken me to Kilimanjaro.


Michael Carrese: (laughs) Yeah, there's pictures of you in it, in fact. 


Shiv Gaglani: Yeah, I went snowboarding in that. So, I own more of that, but also it's just kind of cool way to organize one's life, to say, “This is the year of X, or the quarter of Y, or like, my med school years, my business school years.” I think it's a kind of a cool way to really focus in, like again, going back to this hawk analogy. 


Michael Carrese: Well, and I can totally relate to your point about when you meet these people and talk to them, you get inspired and you feel like you want to do something because they are up against it and they're so committed to their kids and to helping other kids. In fact, I just interviewed Dr. Geri Landman, a physician and mother, and she and her husband -- who's also a physician -- have started Moonshots for Unicorns to find a cure for PGAP3 Deficiency. But from the beginning, it wasn't just about helping their daughter, Lucy. It's about figuring out how they can help every kid that's got a single gene disorder. And that's a theme that you run into talking to these folks all the time. It's really about everybody else who's affected, not just us.


Shiv Gaglani: Totally. Yeah. A great, great community. And we've met parents whose children unfortunately passed away. Dr. Matt Might from University of Alabama lost a child but he's still working on this out of a kind of unity with the community and also knowing that, you know, now he has a life purpose.  I mean, he had a life purpose before, but because of his child, that pivoted him towards this work.


Michael Carrese: Yeah, it's remarkable stuff. So, we've got obviously a lot of guests on Raise the Line talking about rare diseases. Tell folks what some of the other elements are in the Year of the Zebra campaign. 


Shiv Gaglani: This is one reason I've been so excited about having joined Elsevier about a year and a half ago almost. I've talked to founders of startups that get acquired and I'd say like seven out of 10 of them are unhappy with the cultural change and other things that changed. There are certain growing pains -- like we switched from G Suite to Outlook which was pretty annoying and there are a few other things -- but Year of the Zebra is one reason I've been very happy with having joined Elsevier. We knew about their culture and their ratings before Osmosis became part of Elsevier but this project was, in my perspective, the first major initiative we pitched to them and not only did they support it, but they made it a major part of Elsevier Health. They've given us a ton of resources and helped us connect the dots with other parts of Elsevier. 


For example, we're working with their entire Elsevier Health team and launched the Rare Disease Healthcare Hub, which is one of the few healthcare hubs they've created. They have one on COVID-19, one on women's health, and now this one on rare diseases. The hub is basically centralizing all of this great content, not just the Osmosis style videos, but the great global content partners book chapters and the new open access journal called Rare.


That's actually another really cool initiative that we had barely anything to do with. It's the STMJ division of Elsevier which publishes over 2,500 journals, including big ones like The Lancet and Cell with which our learners may be familiar and have submitted to. But this new rare disease journal with a great editor-in-chief out of the Netherlands is gonna be a central repository for patients and parents to also submit their open access content. You might recall Philippe Pakter talked about wanting to do that on the Raise the Linepodcast. 


So, those are just two big examples of other initiatives that Elsevier has done to support the Year of the Zebra. They've obviously put money towards it. What we found with having about 9,000 teammates at Elsevier is that dozens, if not hundreds of them, have also direct experience with rare disorders. Some of our teammates have ankylosing spondylitis. They have kids with Langerhans cell histiocytosis. We have heard directly from these teammates and we've created content or released content around their conditions. Maria Pfrommer, our head of nursing content, was on the podcast with her husband, Jack who has retroperitoneal fibrosis. 


It's added even more meaning towards what we do here at Elsevier and what we can do with our partnerships. So, long story short, I'm very grateful to people like Jan Herzhoff, Kumsal Bayazit, Elizabeth Munn and many others who’ve been supportive of this concept since day one. 


Michael Carrese: So to sum up, they not only walk the talk, they gallop the talk. 


Shiv Gaglani: Exactly. (laughs)


Michael Carrese: So Kilimanjaro...you actually saw zebras in person as part of that whole adventure that you had over there. Tell us about that. How did that come about? What was the experience like? 


Shiv Gaglani: Well, it's been a bucket list item for some years, to climb Kilimanjaro. With the zebra initiative, it was like, well, there's no better time than now to go there, do something hard and raise money for NORD, which we've done, as well as for Beacon for Rare Diseases, which Elsevier has actually worked with since way back in 2016. Dr. Rick Thompson, who's gonna be on the podcast soon, is the head of, it. It used to be called Findacure, now it's called Beacon for Rare Diseases. We've done hackathons and datathons with their organization to find novel drug targets for rare diseases like chronic pancreatitis and we've donated money to them. 


Obviously Kilimanjaro helped, just like running a marathon or a 5K. We put some fundraising efforts behind that. There was a group of eight of us, some of whom are my friends. One was a high school friend who runs innovation at a health insurance company now. But then two of the eight people in my group actually have rare diseases. One has hereditary angioedema, and she carried her medicine -- which was discovered because of the Orphan Drug Act -- up with her to the summit. Actually, the night before we summited, she put an IV in and actually put some medicine in her just out of an abundance of caution. 


Michael Carrese: Wow. 


Shiv Gaglani: The other one has Huntington's disease. Luckily it isn’t symptomatic. It was just diagnosed recently. But they're sort of raising money for Huntington's disease and turning this real tragic thing into a very stoic outlook. So, one fourth of our group had direct rare diseases, and then the others had some sort of connection. 


Obviously it was an incredible experience. I think the formula for memories for me and happy memories is doing things with people you love, like friends and family, in beautiful places -- Tanzania, Kilimanjaro is a beautiful place -- for a good cause. That combination of three things is hard to beat as far as things that I'll hopefully on my deathbed look back on and be happy I did.


And a lot of people have come out of the woodwork since then and said, “Hey, how do we do this?” And we're giving them advice on doing it. Some other groups are raising money. I just heard yesterday from a group at Elsevier that’s gonna do another fundraiser to raise money for these organizations. So, hopefully it's had a bit of a ripple effect in at least our Osmosis/Elsevier community.


Michael Carrese: And if you don't believe that he actually did it, folks, there is a picture out there of him wearing the zebra costume, standing near the sign that says, you've reached the peak of Mount Kilimanjaro. (laughs)


Shiv Gaglani: (laughs) I like these PR moves, as you know. 


Michael Carrese: It must've been pretty cold up there, I'm thinking. How many feet high is it?


Shiv Gaglani: It's 19,300 and change. 


Michael Carrese: That's way up there. So, that's 10,000 short of Everest, roughly. 


Shiv Gaglani: Yeah, Everest still puts it to shame. (laughs)


Michael Carrese: (laughs) But yeah, it was cold up there. Luckily I did a Wim Hof retreat the week before, so...


Michael Carrese: Ah, so you're used to cold.


Shiv Gaglani: Yeah. 


Michael Carrese: Well, it's just amazing, Shiv, and it was a great way to raise awareness of the whole thing. So, how can people get involved? 


Shiv Gaglani: Well, we have an easy site, www.osmosis.org/zebra. If you go there, make sure you’re at least subscribed to our free newsletter that drops a “zebra of the week,” run by Lewis Nasr and Lindsey Smith who are, as you know Michael, two of our rockstar teammates without whom the Year of the Zebra would not have happened. So, that's number one. But number two is they can just email us, [email protected] if they have any ideas. If you have a connection to a rare disease, if you want to create content on it, if you want to volunteer, even if you want to do research, we can try getting you connected. We want to be front and center helping you as a future or current scientist, researcher, physician or other clinician to get plugged in and motivated to help anyone who has a rare disease. 


Michael Carrese: It's going to be exciting this year to see what comes from all of this...all the kind of energy it's bringing to the whole issue and the ripples that'll flow from that. We’re going to have to leave it there, Shiv, but thanks so much for everything you are doing on this great initiative, and for taking time to join us today.  


Shiv Gaglani: Thanks so much, Michael. Take care. 


Michael Carrese: I’m Michael Carrese. Thanks for checking out today's show, and as always, remember to do your part to raise the line and strengthen the healthcare system. We're all in this together.