What’s in your microbiome and how does it interact with your IBD? The bacteria that’s in the gut of someone that lives with IBD is different from the bacteria in the the gut of someone that doesn’t have IBD. This is a major area of study because it may help researchers not only in developing new treatments but also in better understanding IBD. That’s why I asked Arielle Radin, Director of Clinical Research for Gali Health, to talk to me about the Footprints Program.

The Footprints Program is an ambitious research project that is going to sequence poop and saliva from IBD patients. It’s being used in conjunction with the Gali Health app, which is made especially for IBD patients to track their symptoms and connect with other people who live with Crohn’s disease or ulcerative colitis. Participants in the Footprints Program will get access to some information about their microbiome. They can then look at the changes over time and see if there are any trends with the symptoms that are kept in the Gali app. It sounds pretty amazing, which is why I signed up for the program. Arielle Radin, who answers my questions about Gali Health and the Footprints Program, and on a personal note, tells us about getting married during the pandemic.

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Concepts discussed in this episode:

• Research Studies & Clinical Trials in IBD Roundtable
• The Footprints Program
• Download the Gali App (affiliate link)

Find Gali Health at GaliHealth.com, Facebook, Twitter, LinkedIn, YouTube, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, “IBD Dance Party,” is from ©Cooney Studio.

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I Joined an IBD Research Study That Can Help to Predict Flares

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Episode Transcript

[Music: IBD Dance Party]

AMBER:
I’m Amber Tresca and this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.

Have you ever wondered about what’s in your microbiome? We hear a lot about how the bacteria that’s in the gut of someone that lives with IBD is different from the bacteria in the the gut of someone that doesn’t have IBD. This is a major area of study because it may help researchers not only in developing new treatments but also in better understanding IBD overall, including the causes.  And as it turns out, the IBD community can help to get this research moving forward. How can we do that? Well, my dear listener: the answer is pretty simple. We need to hand over our poop for study. That’s why I asked Arielle Radin, Director of Clinical Research for Gali Health, to talk to me about the Footprints Program. The Footprints Program is an ambitious research project that is going to sequence poop and saliva from IBD patients. It’s being used in conjunction with the Gali Health app, which is made especially for IBD patients to track their symptoms and connect with other people who live with Crohn’s disease and ulcerative colitis. Participants in the Footprints Program will get access to some information about their microbiome. They can then look at the changes over time and see if there are any trends with the symptoms that are kept in the Gali app. It sounds pretty amazing, which is why I signed up for the program. And now, hear more from Arielle Radin, who answers my questions about Gali Health and the Footprints Program, and on a personal note, tells us a little about what it was like to get married during the pandemic.

AMBER:
Arielle, thank you so much for coming on the show and talking to me about Gali Health.

ARIELLE:  
Thanks so much for having me, Amber.

AMBER:
I’m excited to talk to you for a variety of reasons, but also because You have a long history of working in the IBD research community. You are currently the Director of Clinical Research for Gali Health. But before that you were the clinical research coordinator for the division of gastroenterology at NYU School of Medicine. Why don’t you tell me a little bit about what your role was like at NYU?

ARIELLE:
Yeah, so it was after college, and I knew that I wanted to get clinical research experience. And to be completely honest, I did not know anything about Crohn’s or colitis before that job. I also had never heard of the microbiome, but somehow this job opportunity landed in my lap. And so I became a clinical research coordinator, specifically for Dr. Leanne Chen, who is an IBD specialist at NYU Langone, as well as Dr. Martin Blaser, who’s I’m sure a lot of people have heard of him. He’s a microbiome guru. So my first introduction to the microbiome was from him. So that was pretty awesome. And essentially, I was the person Then, you know, interfacing with patients, meeting them, recruiting them trying to convince them to give us their stool samples. And we would recruit them into our longitudinal observational research studies. So essentially what that involved was I would meet them usually in a clinic appointment, catch them before they started taking any kind of medication, and try to see whether or not the microbiome was a predictor of treatment response. We are also interested in looking at the role of the microbiome in surgical outcomes. So some of the patients that I was working with, were were getting ready for surgery and so I would meet with them before surgery during surgery, I would collect all of their their biopsies, which was an incredible opportunity, I had to really get over my fear of blood in that job. I would go with them to their colonoscopy and collect research biopsies as part of their colonoscopies. So I really got like a pretty intense in depth experience when it comes to IBD. And I was there for around three years before starting my PhD.

AMBER:
That’s interesting. It almost sounds a little bit like you were an IBD concierge.

ARIELLE:  
Yes, I knew everything. I was involved in pretty much every aspect of our participants, clinical lives and sometimes personal lives. We also made it very easy for people to participate. We were asking for them to give us samples like monthly for years. And so I would go all over the tri-state area. on boats like going to Staten Island like ferries, I would rent cars driving to people’s homes, I would be on the subway. And we would use these little like NYU Llangollen lunchboxes with freezer packs, and I would go pick up stool samples from people’s homes and bring them back to the lab and process them. So I was like the ultimate poop collector.

I also I’m trained phlebotomy too, so I would also get blood samples from them at their clinic appointments. So I got blood stool, and research biopsies. So intestinal biopsies.

AMBER:
Yep. Oh my gosh, I have so many questions just about this. So that’s amazing that I’m glad I asked this question because I don’t think that’s what I would have thought that a research coordinator would be doing.

ARIELLE:  
Me neither.

AMBER:
Also, so you’re trained in phlebotomy? But then you said something about getting over a fear of blood? What?

ARIELLE:  
Yeah, so during my first year after college, I had a job in a substance abuse research treatment lab. And as part of that job, I had to learn how to draw blood. And I fainted during the training just when they started putting the tourniquet on. That’s where I started at through intense exposure therapy, you know, by watching my coworkers do it practicing on my coworkers watching a ton of YouTube videos. As a people drawing blood, I was able to get pretty good at it. And now I actually like really love finding people’s veins.

I feel like a vampire.

AMBER:
That’s no, that’s fantastic. I love that. Did you do that sort of desensitization training on your own? Or did you have help?

ARIELLE: 
No, that was on me. I was basically told that in order to have this job, I had to draw blood. And so I did it. And I’m really glad I did. Because then when I left that job, because ultimately, that wasn’t my passion. And I started at NYU was actually a real perk to them that I had already been trained so that they didn’t have to go and pay for all that training and deal with all of that. So I came into the job being able to draw blood, which is really helpful.

AMBER:
That’s amazing. Thank you for sharing that with me. And we’ve unfortunately, never met in person.

ARIELLE:  
No, I know. It’s crazy. Yeah.

AMBER:
So now I’m like, when we meet in person, the first thing I’m going to do is just show you my arms because I will be interested. Because I’m difficult.

ARIELLE:  
That’s probably why I faint because like, every time they try to draw my blood I like it’s multiple sticks.

AMBER:
It’s challenging.

[MUSIC: About IBD Transition]

AMBER:
Alright, so then you made a big move, right? Because now you’re in California. Yes, you’re at a company called Gali Health. And so I wonder if you would tell me a little bit about Gali Health and the Gali app?

ARIELLE:  
Yeah, so Gali Health is a precision medicine company that has developed a digital health app for individuals living with IBD. And so one thing that I think is really cool about us, but I haven’t really seen elsewhere in a comprehensive way, is that we really take a community driven approach to providing support and information. What that means is that we encourage all of our users to submit insights from their experiences, as well as like any insights that they find on the web. Any content that they think is particularly helpful, they can send it to galley. And it goes into her amazing content resource database. And then that gets delivered to users in a personalized way. So depending on what’s going on with you today, psycho socially symptomatically, you know, anything, the app changes based on your needs today, which I think is really cool. And we’re now taking this community driven approach and this kind of personalization scheme to research, which is, again, something that I don’t think has really been done. So we firmly believe that in order to advance diagnostics, prognostics and therapeutics that enhanced quality of life for those living with IBD, we have to partner with the larger patient community. So I really believe that patients are the experts when it comes to this illness. They’re the ones that are dealing with it 24 seven every single day. We want to make sure that we’re including them in our research efforts because they are an incredible source of knowledge and wisdom.

AMBER:
Insights are really interesting. I am in the Gali app, of course. And what was fun for me is to be able to find a great piece of content that has to do with IBD. And to go in and then just share it with everybody. And I know that it’s going to be there when someone who needs that information, tells Gali or lets Gali know that they’re looking for it. And it’s already been vetted. It’s already been looked at, and it’s not like spaghetti at the wall. It’s like very targeted. So that is, you know, has been so impactful for me, and I think really impactful for other people that are using the app.

ARIELLE:  
It’s essentially like, imagine if Google had only trustworthy information on it, and you never had to search because it would just get delivered to you when you needed it.

AMBER:
Right? And it’s fun too, because Gali will ask you to take a little survey and it may just ask you, gosh, you said you were not sleeping well last night. What do you think was causing that problem? And then you say, Oh, yeah, it was this or that or the other and then Gali says, Okay, well, let me give you some new information on that. And even though I think that I’ve seen a lot of the content that’s available in the IBD space, there’s always something that I didn’t know existed. And I never would have found probably on my own, like you said, using a search engine or using other social media. So it’s, it’s really pretty great.

ARIELLE:  
And I will say like, a decent amount of the content that we’re starting to gather now is not available elsewhere because like I said, we’re actually asking our community members to contribute their own information to our content knowledge source. So you might have seen like, like you said, there’s still more from the web that you probably will never get to see without, you know, gallery delivering it to you. But there is also a ton of unique original content coming from the Gali community that I think is incredibly important for people to be able to access.

AMBER:
That’s true. You can go in and you can maybe write your top five tips for whatever and then you can share it with the wider community. And then that’s available in the app, and the people that are in the app are IBD patients. And so they’re putting into the app what’s important to them. And then that is also available for the patients that are in there looking for that information. It’s just, it’s just great because it’s just a completely dedicated IBD space.

[MUSIC: About IBD Transition Piano]

AMBER:
Gali is also starting some research that is coupled with the app, and you’re calling that the IBD Footprints Program. So I wonder if you would tell me a little bit about the start of this program and what you all hope to learn from it.

ARIELLE:
Yeah, so for me like coming from the clinical research coordinating world and seeing how research is done. From like a logistics standpoint. You know, me traveling all over the tri state area with poop samples. is like having to hound participants to fill out surveys on paper like, from that experience in designing these studies, we have made it as easy as possible for people to participate, as well as as easy as possible for us to recruit and involve as many people as possible. So what I think is really unique and super cool about the program is that it’s at home, which at the time of COVID is like absolutely necessary, especially for individuals with any kind of immunosuppression, don’t want people leaving their homes if they don’t have to.

And it’s absolutely app based. So you know, you let Gali know all about your experiences through using the app. So if you’re already using the Gali Health app, basically involving yourself in this program just means collecting some stool samples. So you’re basically already participating in a sense, all you do is like layer on these bio samples. The other thing that I think is really cool is that we’re recruiting everyone. So a lot of times in research studies, especially clinical trials, which this is not if you guys saw the, you know, like, I don’t know if it’s a good time to plug that Facebook Live. But we just talked all about the fact that clinical research can be a clinical trial versus an observational study. So it’s completely observational.

But what’s nice about it is that we’re recruiting everyone. So we are embracing clinical and demographic diversity, which oftentimes you do not see in research, a lot of times just as a byproduct of the fact that it’s really hard to involve people across the country, right. So typically, if you’re wanting to participate in study, you have to live near some kind of academic medical research center. You have to physically go there, but because ours is completely at home, we’re able to recruit people from all over the country and soon the world. So I will just give a little plug that we are going international, which is very exciting. We’re not there yet, but that is our intention.

The other thing that I think is really interesting about it is that it’s super easy. So we understand that managing a chronic illness is already way too much to deal with every single day. And the last thing we want to do is make your lives harder. So galley makes it completely mindless she messages you, when it’s time to sample, she’ll follow up with you, if you haven’t sampled, she sends you everything you need to collect your samples at home, as well as to mail them back and pre paid on envelopes. So you don’t have to do anything. Essentially, it’s just working in collecting a couple of samples when you’re already going to the bathroom. And then just you can even schedule USPS to come and pick up your samples from your home. So I think, you know, the ease of participation as well as the fact that we’re recruiting everyone. And the fact that this is all through an app is really novel. And I’m hoping it’s kind of technologically and just programmatically what we need in order to advance research in this space.

AMBER:  
Right. So I want to talk for a minute about what this means to collect poop and spit. Because that’s what it is. And I am a participant in the program. And before we got on the call today, I did collect my first sample because Gali told me the other day, she said, guess what, remember, it’s your week time to collect your samples. And I have my box already. Matter of fact, I’ve had it for a little bit. So I had already messaged her and said, When am I supposed to do this? So she told me when and now I’m kind of interested, though, if I like waited a week, like what does she say? But I won’t do that. Because I just feel like that was just what she would do. So this morning, I collected my samples so that we could talk about this a little bit more. But let me know what can we tell people who are thinking about participating? What actually does this involve to collect your own spit, and your own poop for participation in the study?

ARIELLE:
So I think it typically involves two tubes and a hat. So we give you like I said, we give you all the supplies that you need. We did a lot of research and based on my experience, we made sure we picked a hat that could handle any kind of stool because we know that that varies across the IBD patient population. A lot of microbiome studies give you like a little flimsy envelope that you attach to your, like a flimsy little piece of paper that goes in your toilet. And yes, yes, and like, of course, that would be easier for us to send than like the big bulky hat, but like, we get it, you know, some days it’s gonna be like more liquid other days, it’s gonna be, you know, more firm, whatever. So we wanted to make sure that in terms of variability and capturing the heterogeneity of the experience, we’re also capturing the heterogeneity of bowel movements.

So essentially what it means is you just take the hat, you stick it underneath your toilet seat, you go to the bathroom like you normally would. You get up, you scoop a little piece of poop into a tube, and then you drool like you just kind of let spit, I think the easiest way is to just let the spit kind of just happen in your mouth. And then you just spit it into this other tube. You only do that once. So you’re going to collect stool sample of at least four times over four months, but you only have to collect spit once. I know everyone’s dying to do it more, but we only need one. And then you just pop them in the in the envelope that we give you and you just send it back to us. And then you’re done.

AMBER:  
It only took me about 10 minutes. And the first time is the spit and the poop. It was not my first time giving either one of those things as a sample. The spit actually I think is more challenging. I don’t know if that’s just me coming with two milliliters of spit, it kind of takes me a few minutes.

ARIELLE:  
So yep, but that’s fine. You know, just the idea though. In terms of community wisdom, we should totally have people submitting insights around like, what are the best ways to collect your samples? Because there’s tons of tips and tricks around this.

AMBER:  
I’m on it because I have some already that I can let people know about. It is not a lot of poop that you need to put into the vial. So that’s not really, I don’t think too much of a challenge either.

ARIELLE:  
If anything, Amber, it’s people get overeager. Sometimes people fill the tube all the way to the top, and then it gets to the lab. And we’re like, I don’t know what to do with this. So if anything, the thing that’s problematic is people getting too overeager with their school sample. It’s really just like a grape size of  stool. It’s so little like it’s really not that much.

AMBER:  
Let me ask you, though, why, why is it a problem if it’s filled all the way up to the top? Because I don’t think I understand why that would be.

ARIELLE:  
Yeah, so the tubes come preloaded with a little liquid. So I’m sure you noticed that and that liquid is a stabilizer and what it does is it basically takes your stool and the microbes that are living in it, and it freezes them in time. So we know that bacteria propagate constantly, right, and like the community structure of your microbiome will change in different environments. So the second that your stool is outside of your body, things are going to start changing. And so what that’s why once you’ve collected your stool sample, we want you to put it into this pre loaded tube with stabilizer, which essentially freezes your microbiome in time. So we can get a snapshot of what it looked like today, because it’s constantly changing. And that’s also why we’re collecting it multiple times. Because every single time we collected, it will look similar because everyone’s microbiome looks more like theirs than anyone else’s. But it will still vary depending on what you ate that day or what’s going on with your disease or anything that’s happening: exercise sleep. And so that tube is pre loaded with the right amount of stabilizer for the amount of stool indicated.

AMBER:  
Got it that makes perfect sense and I will say so a lot of times when you’re giving a stool sample, you’re just giving the stool sample. So you’re having to put the stool…

ARIELLE:  
On ice…

AMBER:  
Yeah, into something onto something, whatever, that’s actually challenging. Being able to use what’s essentially like a little spoon and then scooping  and then you put it in that liquid actually kind of makes it a little bit easier because you kind of stick it in there and you like shake it off a little bit and then get your next scoop full and whatever. It’s not a lot. It’s only a couple of scoopfuls. But I did find it easier than other collection methods that I have used in the past. And there’s been a few. [laughter]

ARIELLE:  
Good, yeah, no, there’s tons of ways to do it. And that’s also a part of our research. It’s kind of we’ve done we just finished a study actually, that you know about, where we had people collecting stool and to tons of different tubes, different hats, different things, because we wanted to figure out and we’re still trying to figure out what is the best and easiest way for people to collect their stool samples. So for now, this is the one that we’ve gone with, but it could change in the future. We’re adapting, we’re depending it depends on what people tell us and the different analyses we end up wanting to do because the stabilizer changes what you can look at. So yeah, for us, given that we wanted people to collect at home, be able to ship it to a different place in the country, we had to be mindful that we didn’t want to have to deal with any cold chain transport, dry ice and that whole shebang, have you freezing your stool at home, all of that. So we just wanted to make it easy for people.

AMBER:  
It’s very easy. So that shouldn’t really be a barrier at all. And most of us are used to giving samples for a  fecal calprotectin test or something like that, anyway, so this is not really a big deal. And unlike the fecal cal test, where you’ve got a collection, then you’ve got to take it to the lab and then hand it to somebody like this is all done in your own house. You put it in the envelope, because we’re in the middle of a pandemic and I never get to drive anywhere. I’m going to actually drive over to the post office to drop it in the box today.

ARIELLE:  
An excuse to get somewhere.

AMBER:  
Totally an excuse to just leave the house and like drive around the neighborhood. So that’s what I’m gonna do. Yeah. Now that we’ve told everybody how easy it is, we need to tell everybody how they can get involved in the Footprints Program. And yes, what kind of patients are you looking for? I mean, if if you’re post surgical, if you’re on medication, if you’re flaring, if you’re not flaring, who can get involved?

ARIELLE:  
We want, and when I say this, I’m literal, like we want everyone to participate in this study. We have very big dreams for where we’re going. We want to push the boundaries. I think, given the technology today, and the amazing kind of research platform that we’re creating in our app, it really allows us to involve an unprecedented number of participants. And also as you know, like IBD is so variable depending on who you are, what your disease experience is. Not only is it different for you versus someone else, but like I was saying like day to day your IBD is different. So we really want to capture everyone and sample them multiple times. Because I think otherwise, we won’t really get a true picture of what this disease looks like.

So it doesn’t matter if you have an ostomy. If you have a j-pouch like any of that, Gali will send you a very long, but manageable survey that gets at your clinical history. Amber, that one is going to be coming for you look forward to it. So we’re able to kind of, you know, make sure that we know everything about everyone participating. And then instead of excluding individuals based on those variables, we want to actually study them based on those variables.

It’s super easy to sign up. So as part of, you know, 50% of this of this program is collecting stool samples. The other 50% is filling out your health monitor and your treatment monitoring the Gali Health app, so you absolutely have to have the Gali Health app in order to participate. So the easiest way to do it is to just get the Gali Health app. And then you can just chat to Gali saying, hey, I want to join the IBD footprint Study. And then once you send that to her, she will, you know, confirm your email address with you and get you a consent form right away. And then she’ll ask you your address to make sure she knows where to send your kits to, and then you’re good to go.

We only ask that you at least fill out your monitors twice a week when you’re in the study. Although as you know, if you fill them out more than that, you get a comprehensive checking report every two weeks, which is really cool. So you need to do those at least five, you need to have at least five monitors for us over two weeks for us to be able to give you you know, an actual comprehensive report that shows you trends in your symptoms over time as well as how that relates to lifestyle things like sleep and exercise. So it’s really in your best interest to just use the Gali Health app as much as possible. It also ends up triggering the types of content you get in your feed which is what you were talking about earlier.

But if you you know need a little bit more time you want to read the consent form before signing up with the the app, even though it’s free, that’s totally fine too. We have a really great website. It’s just galihealth.com/IBD-footprints. And on that page, there’s a little form you can fill out that says you want to register and then we’ll send you the consent form without you having to download the app so that way, you can read it before downloading if you want to.

AMBER:  
Right perfect. Yeah, so absolutely link to that in the show notes and from my website when I put this episode up on my website, thank you so much for explaining all of that. I will say that filling out the monitors. It’s pretty easy Gali just gives you a notification on your phone and she says Hey, come on in and tell me how you did today. And then you go in and you put in how you’re doing just basic symptoms. You can customize the symptoms, based on what you’re dealing with and how your IBD is presenting.
So you answer these questions. And then it’s really fun too because Gali is like, yay, thank you so much. And then she’ll tell you, okay, you’ve now completed five monitors. And if you complete five more, this is what’s going to happen and the amount of information that that I can give you at the end of the reporting period. And what’s nice about it is that you get like a trendline of, for instance, your sleep. So when I’m tracking my sleep, the nights where I said, Oh, this was not so good. And the nights where I said, Oh, this was better. And then you know, I can go back and look at that and think about what was going on in my life or what was I doing or was it on the weekend and you know, my sleep was interrupted and things like that. So it’s really a great thing because I don’t think I’m unusual in that I don’t really remember what has happened in the past week. So even when I go in to see my doctors and they ask, I usually have to refer back to something to be honest. So having this in the Gali app has been helpful for me.

ARIELLE:  
Yeah, we’ve actually gotten a lot of feedback that users say that they’ll bring their check in reports with them to their GI appointments, because it’s just helpful to like, have a record, you know, like, You’re, you’re saying, This is how I’ve been feeling. But there’s something nice to have that objective, quote, unquote, evidence that you can present like, hey, look, no, like, these are the things I’ve been experiencing over the past two weeks, you know, whatever. And what’s really cool is you can actually, it’s set up so that it automatically gives you a check in report every two weeks. But if you ever want one for a different period of time, you can always just chat to Gali and ask her for one, and she’ll just generate one for you on the spot.

AMBER:
Oh, that’s perfect. Yes, exactly. I’m gonna totally do that.  That’s so useful, especially before I go into see my physicians, like they’re always annoyed at me, because they’ll ask me like, they’ll ask you like, how many times you go to the bathroom a day? I’m like, I don’t know. I don’t count. Yeah, but I tell Gali. So Gali knows.

ARIELLE:  
Gali can be the keeper of all of that.

AMBER:  
Gali can be the keeper. I don’t have to keep it in my brain, the less I have to have in my brain the happier I am.

ARIELLE:
Yeah.

[MUSIC: About IBD Transition]

AMBER:  
Arielle, you have a long history of being involved with the IBD community, I would say I would use the word intimately involved with IBD.

ARIELLE:
Yes.

AMBER:
In all kinds of ways I did not know about until about 20 minutes ago. So I’m just curious, based on your work and your interactions with us, what are your impressions of the IBD community?

ARIELLE:  
So I full disclosure, I do not have IBD if that wasn’t clear when I said I didn’t know about it until my job. However, I am absolutely obsessed with the IBD community, including patients and doctors. As well as their partners and loved ones, so I can give you examples. So for instance, one of my participants, you know, her husband would give me her stool samples. So that, to me is just like such a level of compassion and understanding and the fact that he was helping her be able to participate in a research study like this is not even something that she had to do clinically. And he viewed it as very much like it was the two of them doing this. So I thought like just seeing that was amazing for me. So I got to know their family over time because they were in these studies for years.

Also, you know, one of the surgical patients you know, she was the first surgery case I was doing again, I was still getting over my fear of blood. And I was hanging I had to go hang out in pathology and wait for her intestines to come down so that I could biopsy them and stain them and get different, you know, samples from them. She actually managed to collect a post surgical stool sample for our study, and and she let me just hang out with her all day in post op and like, while she was in surgery, I was just spending time with her parents. So the level of kind of just openness and welcoming and the fact that they were, you know, willing to have me involved in such a momentous day for them was really big.

And then a funny story, you know, just kind of the resilience and tenacity of the patient population that I’ve seen. So one of our participants was participating in one of these studies where we were looking to see if the microbiome predicts response to biologic treatments. And so getting that pre first infusion sample is everything. If we miss that, then we can’t really do the study. And so this participant somehow forgot to bring his hat with him to his infusion appointment. And he called me and it was one of my first weeks on the job because I was in one of those stupid fire training safety things at the hospital. And I got a text from him and he said, Arielle, I’m so sorry. I’m at the infusion center. I don’t know where my hat is. And I was like, to him, I just said, Well, what do you have? And he said that he had the tubes. And he had the gloves. So I asked him, [laughter] I said, I don’t know how you feel about this. But how would you feel about putting a glove on and doing a reach around, and he was like, I’m on it.

And he collected that sample. And in his gloved hand, and, again, none of this was part of clinical treatment. He did not have to participate in the study. But it was important to him that he had his experience be captured. And he was willing to go to extreme, you know, means to do that. And so I formed great friendships. I’m still very good friends with a couple of the participants in our studies and I’ve just never seen a patient population as well as the whole community, everyone in involved in that, as compassionate and resilient as them. Those are amazing stories. Thank you so much for sharing that.

AMBER:  
And now we all know what to do if we can’t find our hat as long as you have a glove.

ARIELLE:
Yes.

AMBER:
Your your other anecdote about the couple where the husband gave you the stool sample, that’s also interesting to me too, because in a lot of cases, it’s the reverse. Like, you see, a lot of times the wives are looking for information for their their husbands, you know, in regards to these things, and now now I’m thinking of this in terms of like relationship status. And, and I seriously when, when we’re finished recording here, I’m gonna go and ask my husband, if he would help me collect my stool samples. Like I’m curious.

ARIELLE:  
Definitely. Yeah. And we actually, as part of our study, we asked if people are partnered, because I think that it makes a difference. And I don’t know we’ll see. But I really do you think you know, I’m a health psychologist. That’s what I’m getting my PhD in and social relationships are huge and given that this disease can be so isolating, finding, finding your people who get you and support you and just are there for you, whether it’s pooping or anything, I don’t know. Like, I would hope that my I just we’re going to talk about this I just got married and I would hope that if I needed to, if I needed help with a stool sample, my husband would help me cuz everybody poops.

AMBER:  
Everybody poops. I’ve been married 20 years, so I’m gonna go and ask my husband, seriously after this, and I’m just curious as to see what he would say if I like come out of the blue. Truthfully, though. I mean, it’s not out of the blue because of who I am and what I do. He probably would, he probably would, he’s not gonna bat an eyelash, but I’m gonna ask him. So tell me though, cuz you just got married in the pandemic. Yeah, the pictures looked amazing. But tell me what that experience was like for you.

ARIELLE:  
It was incredible. So unlike most couples, we weren’t. It wasn’t like our wedding got canceled, so we’re supposed to get married next summer. But a lot of my friends were getting married this summer, and they have to postpone their weddings for a year. And I think Joe and I, so Joe’s my now husband, we were talking and we were just, given that things are not looking like they’re getting better anytime soon. We didn’t want to just wait a year to have to wait another year. And my thoughts are the whole point of having an engagement period is to be able to plan a wedding and we still can’t. So ultimately, we decided to elope at the Santa Barbara courthouse, which was incredible. We did it on the Fourth of July. So the courthouse was obviously closed because it’s the fourth of July and because it’s the pandemic, but my husband is a lawyer and he clerked for one of the judges during law school there, and so the judge agreed to marry us and he literally had the key to the courthouse opened up the courthouse for us to go in there. Of course, as we’re entering, there’s a security guard comes up. He’s like, Hey, what are you doing here? This is closed to the public, and the judge was like, No, I like work here. [laughter] I have a key.

And so we were able to like secretly go in this courthouse and get married, and all of our close family was on Zoom. So we were like, in front of a laptop with the judge, but we I think it was incredible. It was definitely not how I envisioned getting married. And hopefully one day we’ll actually have a real wedding. We still intend that I think my parents would kill me if I didn’t have a real wedding. [laugh] But there was something very special about having that moment where it was just the two of us and being able to because that’s really what it’s all about anyway.

AMBER:  
I’m so glad that I asked you about it because that’s fantastic. And also, I just want to say you, you did have a real wedding. That was a real wedding. So yeah, congratulations…

ARIELLE:  
All the real parts of the wedding.

AMBER:  
Yeah. And and I always think of it in terms of I mean, the wedding, honestly, there’s so much focus on that. And this is just completely my own personal opinion. There’s a lot of focus on that. But it’s the marriage that really needs the focus.

ARIELLE:  
Totally.

AMBER:  
So, you guys did something that was special to you, you’re going to have an amazing story to tell for the rest of your lives. And you guys looked fantastic. You look like you had a great day anyway, so just congratulations to the to the two of you.

ARIELLE:  
Thank you.

AMBER:  
And maybe find out if he would collect stool samples for you. [laughter]

ARIELLE:  
Oh, I’m gonna ask later today. [laughter]

[MUSIC: About IBD Transition Piano]

AMBER:  
Arielle, What are your five reasons as to why you should take part in the IBD Footprints Program?

ARIELLE: 
Okay, reason number one. Gali is your personal health assistant. So Gali is an app for your phone that helps you track your IBD every day. You enter some information about your symptoms and Gali gives you a regular report so you can keep tabs on your IBD. Gali also finds articles and videos for you to help understand what’s going on with your IBD. You can also take part in the Gali community and connect with other people who live with IBD. She also makes it super easy to participate in cutting edge research.

So the second reason is that you get to learn about your microbiome. So when you take part in the Footprints Program, you’ll learn about your own microbiome and how it changes over time, then you can compare that to how your IBD is doing and any symptoms you’re having. Also get to see how your microbiome compares to others in the program.

Reason number three, you’re helping to discover brand new markers of disease status. So in addition to the microbiome, Gali health is really interested in discovering new molecular targets that are relevant for IBD. So we’re trying to uncover information about what’s going on with your immune system through stool samples, which is a brand new area of research. You can think of it as two birds with one stone, your poop helps us learn about your microbes and about you. Importantly, stool sampling is way less invasive than other means for detecting immune activity. And since the immune activity as it relates to IBD is primary Look lies to the gut poop is kind of the ideal biosample to exploit.

Reason number four is that you’re helping to find cures. So when we learn more about the microbiome and your immune system and how they interact to influence your IBD, it might lead to new treatments or even cures. This helps everyone who lives with IBD right now and the next generation as well. So again, this is this like personalized medicine approach, which is the which is on the cutting edge front of IBD, therapeutics, and treatment and management.

And then reason number five, there’s better care for your IBD. So learning about you and your microbiome could help lead to better care for your IBD. The microbiome and its relationship with your immune cells is a really active area of study. So having information about how your microbiome interacts with IBD may help with managing and treating the disease in the future.

AMBER:  
Arielle, you’re such a delight. Thank you so much for coming on About IBD and talking to us about the Footprints Program, I hope that more people will decide to take part in this study, especially because there’s something in it for them too. So in the long term and in the short term, so thanks so much for talking with me about it.

ARIELLE: 
Thanks so much for having me, Amber.

[Music: IBD Dance Party]

AMBER:
Hey, super listener. Thank you to Arielle Radin, Director of Clinical Research for Gali Health, for explaining more about the Footprints Program. You can download the Gali App by searching for it in the App Store, or you can use my affiliate link that I will put in the show notes. Then you can start tracking your symptoms, becoming a part of the Gali community, and even talking with Gali in the app. If you are thinking about taking part in the Footprints Program, ask Gali about it in the app and she will get you started. You can also follow Gali Health on Twitter, Instagram, and Facebook as @galihealth. I will put all the information in the show notes. 

Thanks for listening and don’t forget that you can find me, Amber Tresca, all over the interwebs as @AboutIBD, on Facebook, Twitter, and Instagram. I will put all this information in the show notes. or you can find it on the Episode 76 page on my web site, aboutIBD.com. 

ARIELLE:
I’m taking you into my bed now.

AMBER:
Oh, perfect.

ARIELLE:  
We’re getting intimate.

AMBER:  
Now that we’re getting intimate, it’s IBD after dark.