Leap Together

In this episode of the Leap Together podcast, we’re honored to feature Taleena Koch, founder of the Breathe Support Network. Driven by personal experience caring for her mother diagnosed with idiopathic pulmonary fibrosis (IPF), Taleena transformed her journey into a powerful advocacy network supporting thousands navigating respiratory diseases.

Join us as Taleena shares how personal caregiving challenges sparked her passion for advocacy, the critical gaps she discovered in patient support, and her remarkable effort in building a global community dedicated to education, empowerment, and connection. We also dive into the evolving landscape of clinical research, insights into lung transplantation advancements, and how advocacy plays a pivotal role in shaping more patient-centric trials.

Tune in for an inspiring conversation on turning personal trials into impactful triumphs, and discover how collaborative advocacy can genuinely transform lives.

Creators and Guests

LB
Host
Laura Brencher
Vice President of Advocacy at Leapcure
ZG
Host
Zach Gobst
Founder and CEO of Leapcure
TK
Guest
Taleena Koch
Founder of Breathe Support Network

What is Leap Together?

This is the Leap Together podcast, where we highlight top leaders driving breakthroughs in clinical research and life sciences.

Taleena:

So through the six years, everything that went on with mom, I just learned. Every time something new happened, researched it, I asked questions, I learned about what was going on, and just took that leap. When mom passed away in 2009, I just recently joined a caregiver support group online and I decided to stay in the group to help others because I didn't want people to be alone like Mom and I were for the majority of her six years.

Zach:

Welcome to Leap Together, the show where we spotlight voices shaping the future of patient advocacy and clinical research. I'm Zach Gobst, and today I'm joined by Leapcure's patient advocacy lead, Laura Bruncher. This episode is brought to you by Leapcure, the leader in patient engagement and recruitment for clinical trials. Leapcure's equitable and empathetic process accelerates research while empowering patient advocacy. Hundreds of studies and millions of patients across more than 50 countries have used Leapcure to average 62% of study participation.

Zach:

Visit leapcure.com to learn more. Today, we're honored to feature someone who's turning personal experience into powerful impact, Taleena Cook, founder of the Breathe Support Network. What began as Taleena's journey supporting her mother's chronic illness has become a lifeline for countless individuals navigating respiratory disease. In this episode, Taleena shares the inspiration behind the network, highlights the gaps she observed in patient support, and discusses how she's creating spaces where people feel genuinely seen, heard, and empowered. Selena, we're thrilled to have you here.

Zach:

Thanks for joining us.

Taleena:

Thank you. Thanks for having me.

Zach:

Teleena, curious to hear your story of how you got involved in advocacy. I know it started with your family, but the drive to build community and advocate for the patients that go through this.

Taleena:

I got started in this when my mom was actually before she was diagnosed. She was having problems with chronic pneumonia and everything for about two years. And so I was helping her as her caregiver during that time. And then finally I was able to get her, she was living in Montana at the time, so I flying back and from Seattle to Montana. And I got her out here to Seattle and I got her into a doctor at University of Washington Medical Center.

Taleena:

And it took us about, I don't know, eight months, but we finally got a diagnosis and we found out that she had IPF, idiopathic pulmonary fibrosis. And we didn't really know anything about what it was. And mom's not the, she was never the type to be able to like just go and get online and research and things like that. So she asked me to take the lead on that and just help her manage this disease because she didn't really, she had no idea what she was faced with and neither did I. So I just started getting online and doing my homework and learning as much as I could, asking as many questions of her doctors and her nurses.

Taleena:

And they were incredible. They were constantly there for me. They answered every question I had. They were very helpful and helped me learn. So through the six years, everything that went on with mom, I just learned.

Taleena:

I just, every time something new happened, I researched it, I asked questions, I learned about what was going on and just took that lead. When mom passed away in 02009, I just recently joined a caregiver support group online. And I decided to stay in the group to help others because I didn't want people to be alone like mom and I were for the majority of her six years. Like, we didn't know anybody else with IPF. So we knew people with COPD, that was it.

Taleena:

Mom really didn't have anybody to identify with for her disease. And I was fortunate enough to at least have people to identify with as a caregiver. So that did help. But, I stayed in the group and I helped other caregivers. And eventually I ended up owning that group and three others and took them over and grew them to the over 20,000 people we have now in our support group network worldwide.

Taleena:

Our goal is to help as many people as we can, patients and caregivers both, any loved ones who want to know what's going on, friends, family. We just try to help them so that they understand what the disease is, how to live with it, things like that. Over the years, I've tried to stay educated, going to conferences, medical conferences and things like that, which has been great. I've been able to meet clinicians from all over the world that are experts in the field and learn more from them. So that's been good because I've been able to take that back to my group and at least help people better understand what's going on, understand new trials that are coming, understand all of the new advancements that we have had in I know for some people they think there hasn't been a lot, but trust me, there's been a lot. And so I've been

Taleena:

able to take that back to my groups and it's been a win win, I think, for everybody.

Laura:

I had a quick question just on that actually. I'm curious, when you went online looking for information and potentially support, was there much out there? And have you seen that grow since you've been involved? I could imagine I've got an assumption that there's been more and more online spaces to go to, but what's been your experience of seeing that change?

Taleena:

There has been incredible growth in the online community, truly. We have found, of all, we have found advocacy groups like Leapcure. Those groups did not

Taleena:

exist, or at least we didn't know about them back in 2009. And so that has been something that I've seen grow. I work with many advocacy groups and it's been great to be able to do that, especially working with advocacy groups all over the world because we can get help for our patients that are not necessarily in The United States.

Taleena:

So that's very helpful. So that's been one thing that I've seen extreme growth in is the number of advocacy groups that are out there. The other thing that I've seen a lot of growth in is just the number of support groups that are out there. I can't even begin to count how many support groups there are just on Facebook alone. And there are other platforms for support.

Taleena:

People have to be careful. So we run our support groups pretty tight. My moderators and I are very careful with making sure that we tackle the spammers and support group, things like that. I've seen other support groups. I'm in many other groups, and I've seen some other groups where it seems like the admins have just disappeared.

Taleena:

And that's really bad when you're dealing with something like this. But but there there's a lot there are a lot of other really great support groups out there. So mine is not the only one, definitely. There are some great groups out there, and that's it's just grown.

Zach:

What stands out to me is your dedication to educating yourself, educating others, support your family and support others over all of this time, I think. Curious on your kind of journey and path into leading advocacy and being an external advocate, not just for yourself. What were some of the unsurprising rewards, things that you wouldn't have expected from taking this path of really advocating not just for yourself, but to empower others?

Taleena:

I'd say the biggest reward probably in what I've been doing are the people that I have met. Many of the people in my support group and in other groups and people that I've just met generally have become like family to me. That's something I did not expect. I did not expect to join a support group and become close friends with somebody that I met in 2009 that I'm still friends with today, things like that. And I think just the sheer amount of education that I, the knowledge that I have gained about this disease, I tell people that what I know is a drop in the bucket compared to what's out there as far as the knowledge about this disease.

Taleena:

But I've also talked to many doctors, my own doctors who have never even heard of the disease. And so it's sad when you see that there's so many clinicians out there that don't know what this disease is. And we need, we really need every single clinician out there, whether they're a doctor, a nurse, respiratory therapist, we need all of them to at least know and understand the disease. It should never be that a, I won't say non educated because it's not that I'm not educated, but I'm informally educated in this disease. Shouldn't know more than they know.

Taleena:

And they need to know this stuff. That surprised me because I just would have assumed that everybody knew what this was, especially in the pulmonary field. I expected that every pulmonologist in the world would know what this disease is, and there's so many that don't, Or they know what it is, but they don't really know much about it, how to treat it, or how to diagnose it really well and things like that. And that's a scary thing. So we're constantly pushing for education of our medical community and helping them helping them to grow and trying to get as many people knowledgeable about this as possible.

Taleena:

And it's happening. It's just happening slowly.

Zach:

I was gonna ask you a question more. Our progression towards, like, how impactful the people we'd meet along the journey, I I think, was quite similar. I think at it was like, hey. We wanna do something about this. And then once we got immersed and got to meet a bunch of people that are just full hearted and can partner with you to make an impact and, yeah, really get to know people involved in driving clinical research.

Zach:

And for us, I think that's ended up becoming what's almost most important to us about our work. And so, yeah, hearing that from you, I think that reminded me of that. And and then I think the the part of what you said, when you think of the role that you can play as an advocate, because the medical community, they're not really well positioned consistently to advocate for patients. They might even have education gaps themselves. And so that you can come in, become a domain expert without knowing the medical side and actually having just, like you said, a drop in the bucket in terms of knowledge about some of the things in the domain, it speaks to the impact advocacy can have and the impact that you've grown into being able to take on.

Zach:

Laura, interested in kind of your path of this too. You've been with Leapcure now since 2018. Right? But, yeah, the role that we can play with advocacy and research, interested in kind of any reflections on your end.

Laura:

Yeah, and to start, I think, Taleena, you're the perfect example of how advocacy changes things and is the connection between patients and research and how we really move it forward. And just a major thank you for your partnership over the last few years, but I think there is just a knowledge of the day to day burden of conditions that research can't always be as close to. And so with advocacy, we get that insight, we get those important day to day knowledge and nuances that a patient goes through. And we need to know to really one design trials, understand how to support patients through the patient journey and to be able to hear that from advocates like yourself and caregivers like yourself, and sometimes directly from patients as well, be able to elevate that and take it to researchers and say, hey, we could do this differently and better for patients. And here's how we can make this research a success together.

Laura:

That's been really incredible. I guess an honor to play that role in the middle. But that for me is the standout thing of why we do what we do, I would say.

Taleena:

Leapcure has been amazing. My partnership with Leapcure has been amazing because we have been able to connect so many people with research through your organization, research that we would not have known is out there. And that is what's really important is just if we don't get our patients and our caregivers when needed connected with research, then we can't find a cure. And we have to get them connected. And it's a lot of work and it's hard finding all of that.

Taleena:

So having these advocacy organizations out there that they're the ones that are actually finding the research and then we just connect our group members with them is so helpful. And I want to go back to one thing I said because I don't want people listening to this to misunderstand something either. So when I talk about the knowledge that I have gained with this and everything, want to make sure that everybody understands in our support group, we do not diagnose people, we do not tell them what to do as far as their treatment. What we do is we educate them. We educate them about the disease and about specific things that might be going on with them, and we help them find questions to ask their doctor.

Taleena:

We help them learn just like I did, only they don't have to reinvent the wheel to do it. So we're already there to teach them. I had to learn this stuff on my own. Somebody wasn't there really to help me on this journey. So my goal has always been to empower my group members with knowledge so that they can go and make sure that they're asking their doctors the right questions, make sure that they're getting the right treatment.

Taleena:

And I wanted to go back and talk about that simply because I want people to understand that we are not out there to try to diagnose people. And there are people out there that think that. There are many people out there that think online support is dangerous. Online support is not dangerous if it's done properly. I have seen other groups where people tell people, oh, you should be doing this or that or the other.

Taleena:

And there are some very dangerous patients and caregivers out there that are telling people things to do that are not tested, not FDA approved, not even in a trial, all these things, we don't do that. And I just wanted to make that clear, just simply because I know that we have people out there that think that's what we do and we don't. Encourage them. I would encourage anybody to join my group. If anybody ever wants to know what our group is, join the group and watch and see, especially our clinicians.

Taleena:

We need our clinicians to encourage their patients and caregivers to join these support groups because they may not have face to face support where they're at. Even if they do have face to face support, that is usually one day a month for two hours. That's all the support you get. And then you've got the rest of the month where you need help, you have things going on, you have questions, and you can't get answers. So the online support groups offer that 20 support.

Taleena:

So I would encourage any clinician to jump in the group, see what it's like, see what we do, and have a good, thorough understanding so that they can feel comfortable encouraging their patients and caregivers to get in these groups and learn.

Zach:

I admire that a lot. You're trying to build integrity for a growing community so that peep people can more easily get education that'll help them and not be scared of learning how to advocate for themselves or get the support that's going to be most helpful for them. I love that. I think I'm also curious about your views on what you've heard from research and some of the different approaches patients can take. IPF is a really challenging diagnosis.

Zach:

And there's research opportunities, there's lung transplants, other considerations people might be making. And you've got this, like, global community lens that I think is really fascinating. Interested in what you've seen evolve over the years in research and lung transplants, and if there's anything you're excited about that's in our future.

Taleena:

Let's talk lung transplant So what I have seen evolve with lung transplant is the age at which somebody is allowed to be transplanted. When my mom was diagnosed in 02/2003, the cutoff age for most transplant facilities was 65. So if you didn't get listed by the time you were 65 years old, you didn't get listed. That has changed dramatically. We have so many facilities now across, at least across our country, that will allow patients to live up to age 70 or even 75.

Taleena:

I have heard of a few people who have gotten transplanted at like 78 or 80. And the thing that people need to realize is that 80 now is the new 60. My father-in-law is 84 years old, and you would not know that man is 84 years old when you look at him. You would think he's maybe maybe 70.

Zach:

Yeah.

Taleena:

And mentally, his mental acuity, he is probably 65 or 60. He is, he is very young for his age and he is in great physical condition. And if he were to get something like IPF, he might wanna get a transplant. And he's 84 years old. And we had a gentleman in the group who asked about getting transplanted at the age of 89.

Taleena:

And it just, we tell them, you know what, talk to your doctor, talk to the transplant team, find out if a transplant is possibly something you can do because so many people are so much younger than what their age really is. So that has really changed. And there are some facilities that don't even have a cap on age. They simply look at the patient. They look at their other health besides the fact that they have this lung disease.

Taleena:

How healthy is their heart? How healthy is their brain? How is their other health? So they look at that stuff instead of just looking at their age, looking at a number or looking at a calendar. They don't do that in many places now.

Taleena:

They just look at the patients. So that has been a huge change. And it's opened up transplants for so many people. And you think of somebody who's 85 and it's, oh, they might only get five more years. Five more years if you're 85 years old with IPF is great.

Taleena:

It's not living to 100 maybe, but they might get ten years too. We don't know. That's the thing about transplant is you don't know at all what a person's outcome is going to be.

Zach:

I heard the other day that, like, college students today might live to 120. And understanding where we are in that Yeah. And I I don't know the validity of that data. I heard it on a Malcolm Gladwell podcast. But but, yeah, I think understanding where people are and using age is the limitation it's been in the past, I think, is, a good message.

Taleena:

And then as far as research, oh my gosh. So when mom was diagnosed in 02/2003, she was given the opportunity to join a study. And she chose not to do it simply because at that time her and I knew nothing. And she was worried about getting a placebo rather than getting the drug. But we weren't really thinking about the fact that wouldn't it be great if you did get the drug and it worked?

Taleena:

But we didn't know that then. We didn't think about that at that time. So it was much different back then. And there was not much research at that time. There were only a handful of studies.

Taleena:

Now there are so many studies, more studies than I can count out there about IPF and other forms of as well, which is great because the other part of the community, the part of the community that does not have IPF, is very happy to have other studies because they have felt ignored. And they're really not. The reason why IPF, for people who don't know, the reason why IPF is the mainstream of studies is because it is still the most common form of the disease. And once something is found to work for as one of the anti fibrotics did, then it it was studied to be used for other forms of and it was eventually approved for that. And now the other anti fibrotic is going down the same path.

Taleena:

So it eventually gets to everybody, but they do start with IPF because that is the most common form of the disease. One of the biggest things that I have seen, one of the biggest changes I have seen in research has actually come in this last couple of years. There are three drugs out there right now that are in trials that could be game changing if they end up working. I believe, I think one is going into a phase three trial and the other are in phase 2b trials. And those drugs could change everything as far as how they help patients, of all.

Taleena:

Drugs that have very little side effects instead of the two anti fibrotic that we have now. It's great to have these anti fibrotic, it's great to have these medications that might slow the disease, but when the patient has such severe side effects that they cannot take the drug and they have to stop, and it's worthless. So that's a huge problem. And there have been studies done on those drugs that show the number of the percentage of people that potentially might are able to stay on the drug and it's very low. And it's very heartbreaking to see that happen because years of study and billions of dollars were thrown into that.

Taleena:

But the side effects are too severe. So some of the drugs that we have in the pipeline right now, the side effects are very minimal. And one of the drugs we have in the pipeline right now does something completely different and actually tries to heal the lung cell. So if those drugs actually get

Zach:

all

Taleena:

the way through phase three and get approved and work, then we might have a game changer. I look at one of them as possibly being our light at having something that helps stop or reverse this disease. And I really truly would love to see all three of these drugs become successful because they're all doing great things. I've had the opportunity to work with a couple of the pharmas on surveys and setting up their clinical trials as far as their trial protocol and how much interaction there is needed with a patient and a clinician. And can there be things that are done at home?

Taleena:

Can nurses come into the home rather than patients going out? Those are things that are changing. And we need that because it's very difficult for patients who are in these trials to go to the clinic as many times as they need to each year. It's a very tough process getting these patients out of the house, to travel. Even some of these patients may have to go three or four or five hours to get to their clinic.

Taleena:

So it's a big deal. Some of these patients have to stay overnight because they have to travel too far. So they travel to their clinic, they have their tests, they stay overnight, they go home the next day. And it's really difficult for these patients to do it. People have a misunderstanding of supplemental oxygen.

Taleena:

They think that their loved one or a person that they know, whoever that's on supplemental oxygen is fine because they're on supplemental oxygen. So they they in their head, they're like, they're functioning at a 100% because they've got oxygen to support them. That is not the case at all. They are still their body still is climbing a mountain every single day. They're still struggling to breathe.

Taleena:

Just because they've got supplemental oxygen does not mean that everything is perfect. So when you think about these patients having to leave the home and go somewhere four or five hours, they have to haul around all of these tanks of oxygen in order to get there, it's tough. So we're now seeing changes in trial protocol so the patients can stay at home and have some of these tests done at home. And two or three times through the trial protocol do they have to, through the year, they have to go into the clinic. So it's a lot better.

Taleena:

And it's changes like that that we need to continue to see. We need to continue to focus on what it is like for the patient and what it is like for the caregiver. It's not easy for a caregiver to get their patient out the door. Trust me, been there, did it, wrote the book. Right?

Taleena:

Like I had to get mom out the door when she was on 12 liters per minute of oxygen. And we had it easy because we had these portable oxygen tanks that were like, I don't know, a foot and a half tall, and they were filled with liquid oxygen. But we had to take eight to 12 of them with us. So it's filling all of these tanks, putting all of these tanks in the car, getting mom in the car, getting mom out of the car, getting tanks with us on rollers to get her to where she needed to be. It's a lot of work and it's stuff like that chain it has been changing.

Taleena:

People are thinking more about the patient and the caregiver, which is good. I hope that answers your question because that's a long what I've seen happen since 02/2003, so twenty two years.

Laura:

And I heard you mentioned a couple of times your direct relationship or partnership with farmer organizations, and it sounds like you've been able to really use your knowledge and experience to inform what they're doing, which is exactly what should be happening. But I'm just curious about those relationships and dynamics and I guess what makes a good relationship with a farm organization for you, ones in which you feel heard and equal and where you feel like a partner.

Zach:

Yeah, I'd like to add because on Leapcure's end, we'll try to connect advocacy groups and pharma and they'll fixate on some sort of issue. And pharma might get the perspective like, oh, this advocacy group is not a great partner or fit. I think what's important is thanks for sharing all that, Selene, because the impact of what these treatments can do for people. You're living and on the edge of your seat. You understand the impact to your community of, hey.

Zach:

If these things can work, this can really be a game changer. This is something that's deeply important to you. And you also connect the dots to what's going on in these studies when there's an overnight, when there there are different criteria involved that that might be exclusionary. When the feedback comes that, okay, the study design isn't useful, I think there's so much depth behind your feedback that sometimes gets missed in industry, that sometimes gets missed by the people that are trying to run the science. I think as an advocacy leader that's able to aggregate so much information and so many experiences and what's going to be useful.

Zach:

I'm still interested in your answer to Laura's question about what makes it a helpful partnership. But like, I just heard a lot of kind of rich depth about what you understand and what the stakes are for these studies. For partners, what's what are the good partnerships with industry for you?

Taleena:

So I've been lucky. In the partnerships that I've had, they've been very good about keeping me informed of changes that have come along. of all, asking for my direct feedback in whatever it is that they're working on. I don't I'm not really sure that I have a great answer for Laura. I've just been lucky that I've had good relationships with the pharmas that I've worked with.

Taleena:

And I've only worked with a couple, but it's the relationship has been amazing. And learning from them too has been wonderful because I haven't had that inside view into how pharma works up until that point. So learning from them has been really good. And it helps me to understand why things are done the way they're done with regard to a drug trial. We have many things in this country.

Taleena:

We have the FDA that oversees these things, and we have all kinds of things, laws and rules that have to be we have to abide by when running a drug trial. And really any kind of trial for any therapy for a patient. And I've been able to learn how a lot of that works. And it's given me better insight into, of all, why it takes so long to get a drug through the trials and to approval and through approval and things like that. But my relationships, I don't really know really how to answer Laura's question specifically is that I've just been very lucky that the pharmas that I have worked with have been very willing to work with me and consider me as part of the equation.

Taleena:

And not just me specifically, but what I can help bring for them. So that has been very good. And I forgot your question,

Zach:

Zach. I was interested in what actually you provided, which was how that relationship works. And because there are plenty of misconceptions around pharma and research being at odds with advocacy.

Taleena:

Right. And we're trying to make sure that we create partnerships with pharma.

Zach:

Yeah.

Taleena:

We need them. Yes, there are people out there that have been at odds with pharma and we have bad things that we hear about pharma over the years and things like that. The reality is without pharma, we wouldn't have any of the therapies that we have for any illness or we wouldn't have the flu vaccine. We wouldn't have the COVID vaccine. It's like, we wouldn't have anything.

Taleena:

We would still be having millions of people dying every year from the flu. Literally, when you think about it, there's all of these things we would not have without pharma. And we need to partner with them. We need to partner with them because one, we need them, but also we need them to understand what we as patients need. Honestly, it's better if patients understand what pharma is trying to do for them.

Taleena:

And it's better patients understand why it costs so much to create a drug. This it's not an inexpensive endeavor. So it's better if people understand that. There were so many things I didn't understand going into it and I understand better now. Well, I think there's some things that could change, but I just, we really have to partner together And we have to stop competing, seriously.

Taleena:

People competing in the advocacy area, in the pharma area, in the support group area, these competitions are not healthy. These competitions are not helping people. So I have always refused to compete. I'm just here. I'm gonna continue doing what I do.

Zach:

I remember having conversations with other companies in our space where it's, I'm gonna tell you most of the things that have been helpful for me, even though you might be doing something. You might offer services that are similar just because this what we're doing is bigger than It

Taleena:

is bigger than us. And Yeah.

Zach:

And so that point on competition, I think it's if the other recruitment company, like, helps get a cancer treatment to market a year sooner, that's great. And Yeah. I do have views on I don't want you to lose trust for everyone in our industry. Please don't screw up. That's a little bit of a view I have on competition at times, but AI helps me not have to worry about that as much.

Taleena:

We need to have trust, and we need to protect that trust. So that's where I come from and have come from since I started doing this. Prior to this, I was a stay at home mom taking care of my little kids, and that was my life. That was a great life. But I I could have walked away when mom passed away.

Taleena:

And I didn't simply because I just I felt like I needed to help others. I needed to make sure that they weren't doing this alone and help them find the resources that they need. And those resources include advocacy groups like Leapcure and getting them what they need. So that's what this is about.

Laura:

That's truly amazing how committed you are. And you just reminded me of something you said earlier, which was really interesting where, I guess if patients need to find options about clinical trials, there's nowhere easy to go. There's websites where you can go, but it's all very scientific in language. And so if you want to know what your options are, it's not always easy to know where to go. And there isn't always a central pool of information about what your options are.

Laura:

And I think asking physicians to know every clinical trial out there is difficult as well with their day to day of caring for patients. I think there's a massive role advocacy groups play in being that kind of central point for patients to be able to go and take in that little bit off physicians as much as they can.

Taleena:

Yeah, it's very helpful because the physicians don't know every trial that's out there. They know the ones that are in the center that they're working in, but they might not know about some of the others. Or they might think my patient doesn't want to travel to this other center for this trial. There's so much out there and patients don't necessarily have to go to the center where they're being treated to get into a drug trial. They can go to another.

Taleena:

It's the same thing with transplant. Patients always think that they have to be transplanted. If they're going be transplanted, they think that they have to be transplanted in the center that their doctor refers them to for transplant evaluation, and that's not the case. They can go to any transplant center in The United States. They may have to travel, and they may have to relocate for six months, but they can go wherever they want.

Taleena:

Now in other countries, it's different. It's not like that as much in The UK or other countries have their own rules and laws around how patients are treated medically with this disease. And for those patients, I usually send them, I make sure to send them to advocacy groups over there in their countries and send them to Leapcure, because Leapcure works everywhere.

Zach:

I think we're in 50 countries. Yeah,

Taleena:

and I've got patients from 99 countries in my groups. Getting people those resources, I don't always have the answers. I live here in The US. I don't always have the answers for every other country. Sending them somewhere else for help is great to be able to do.

Zach:

I love this conversation. I I we got to hear so much of what's behind how you think about advocacy and how you are doing terrific work for IPF. But anything else that you wanted to say?

Taleena:

I just wanna say thank you. Seriously, thank you for the partnership from Leapcure over the years. Thank you for this podcast. Being able to get this information out there, keep doing more of it. The more of this stuff we can do, and the more we can get people to listen and learn and start helping and doing more of this type of thing, the better off we all are.

Taleena:

I've got, like I said, I've got 20,000 plus people in my support group. That is nothing compared to how many people are out there living with this disease. Twice that many alone, dying every year from just from IPF. And we have to get the word out. We have to keep advocating.

Taleena:

We have to keep working. And we just have to keep doing it for other people, for people who need the help. So that's why I'm here.

Zach:

I love that. Getting to to connect with folks like you and be a part of helping you in some way. It's it's really special to us, we're, yeah, grateful for you for your partnership, for being a part of this podcast with us. And, yeah, we'll be excited to to keep in touch, maybe come back in a year or so and reconnect too.

Laura:

Thank you. Thanks, Taleena.

Zach:

That brings us to the end of today's conversation with Taleena Koch. As always, thank you for tuning in to Leap Together, where we highlight the changemakers shaping the patient experience in clinical trials. Until next time, keep advocating, keep connecting, and never underestimate the power of your voice.