Advocacy in Action

**Caleigh (Host):**
Welcome to Our Fight to Breathe, a podcast rooted in resilience, community, and the power of storytelling. My name is Caleigh Haber and I'm so glad you're here. I was born with cystic fibrosis, a progressive, genetic, rare disease that affects the lungs and digestive system. I've undergone two double lung transplants, spent years navigating the healthcare system, and and have lived through moments I wasn't sure I'd survive. But through it all, one thing has kept me going. Community. The fierce, brilliant and brave voices of others who know what it means to fight for every breath. This podcast was born from that fight.

Our Fight to Breathe is a space to elevate the voices of people living with chronic illness, disability and rare disease. It's a space where we talk about the realities of what we face there. The triumphs and the grief, the injustice and the joy, the medical complexities and the very human stories behind them. Each episode will feature guests from all corners of the CF and medical world, from patients and caregivers to healthcare professionals and advocates. Together, we'll explore not just what it means to survive, but what it means to truly live. My hope is that you'll walk away from each episode feeling seen, understood, and a little less alone. Whether you're navigating this life yourself or you're here to learn, listen, or support someone you love, this podcast is for you. Thank you for being here. Let's keep fighting together.

Today's episode focuses on advocacy and action. Whether it's fighting for access to care, funding research, or simply raising awareness, advocacy is how we drive change and make our voices heard. For me, advocacy isn't just a word, it's been a lifeline. As someone born with cystic fibrosis, I've learned firsthand that staying silent simply isn't. That's why I founded Fight to Breathe. To create a platform where stories matter, where lived experience has power, and where people with CF and other chronic conditions don't feel invisible. With Fight to Breathe, I've made it my mission to speak out, not just for myself, but for those who can't. Today, we'll talk about why advocacy matters, how it creates impact, and how every single person has the ability to fuel progress. Whether you're starting a movement or simply sharing your truth.

Our mission with our Fight to Breathe is to offer a platform for people to voice their opinions in an accepting and non judgmental atmosphere. We want to foster a sense of belonging and support, offering insights, sharing experiences, and amplifying the voices within the cystic fibrosis community. Each episode will bring you closer to understanding the realities of living with cystic while also highlighting the strength, resilience and hope that bind us all together.

Now, let's jump into the episode.

Today, I couldn't imagine a better person to explore the power of advocacy with than our guest, Emily Kromar-Grolinkoff. Diagnosed with cystic fibrosis at just six weeks old, Emily has taken her personal journey and turned it into a global movement. She's a nationally recognized speaker, thought leader, and driving force behind Emily's Entourage, a groundbreaking nonprofit accelerating research and drug development for people with rare nonsense mutations of cystic fibrosis. What began as a grassroots fundraiser in her family's living room in 2011 has since grown into raising millions for research, building partnerships with scientists and biopharm companies, and fostering a thriving community rooted in action and hope.

Emily's work is living proof of what can happen when passion meets purpose and refuses to quit. As Team EE puts it, “we believe that change starts with one person and one community that dreams of a better future and has the audacity to believe that that future is up to them”. Welcome to Our Fight to Breathe.

Emily, in your own words, can you share with our listeners who you are?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage)**
Yeah. So I just turned 40 this year, so that was a big milestone. And I am now a 40 year old living with advanced stage cystic fibrosis. I am part of the group of people that don't benefit from the CFTR modulators. And so back in 2011, my family, friends and I started Emily's Entourage because we saw the incredibly exciting breakthroughs that were coming for the vast majority of our CF community and yet realize that there was a group of us, we called it 10%. It's actually much bigger than 10% that wouldn't benefit from those breakthroughs and that didn't have time to wait for traditional research and drug development. And so, despite having no background in fundraising and no background in science, and really no desire to start a nonprofit foundation, we were spurred by kind of the collision of desperation, but also the hope of the CFTR modulators. And so we dove in headfirst and we launched Emily's Entourage. And so Emily's Entourage is a nonprofit that is singularly focused on accelerating research and drug development for those in the final 10% of the CF community that do not benefit from existing modulators. And we fund grants. We make, we have a venture philanthropy arm through which we make strategic investments, we host scientific symposia. We do, we do all sorts of Things really whatever it takes to get us to the finish line as quickly as possible. And our finish line is life saving therapies for every single person with cf. No mutation left behind.

**Caleigh (Host):**
Exactly. That's right. I think that people hear the word gene modulator and immediately think that it's one everybody qualifies and that it's a miracle drug. And people living with cystic fibrosis oftentimes don't actually have that experience. And that's not actually the reality of a lot of people living with cf. It is for some people. And I think it's incredible that people have come off transplant lives, have families, you know, aged. We've seen cf, now the life expectancy of individuals living with cystic fibrosis double in the last, like, five, ten years.

So we often hear this word advocate and advocacy, and it means something different to everyone. What does advocacy look like for you? And why do you believe it's important for patients and family to use our voices?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
So I guess to me, advocacy is about seeing a need in the world, using your platform to do everything you can to bring much needed attention and to create solutions for that population. And so, you know, in this case, I happen to be part of the population, but you can also be an advocate for groups you're not part of as well. And I think the world needs that too. And so that, to me, is what advocacy is about. Using your voice and using your platform and hustling like it's nobody's business to get changes that you see in the world made.

And I think that one of my biggest lessons learned from Emily's entourage is that a lot of times I think it's really easy to go through life and just sort of assume that, like, the powers that be, like the huge institutions, that they've got it all covered. And it's been both incredibly empowering and also at times incredibly terrifying to realize that I think a lot of times that's actually not the case. And that it takes a deeply invested person and community to drive really impactful change. And nobody has a bigger vested interest than those of us with CF and the people that love us. And so I think we are uniquely poised to lead the changes that we see need to be made.

**Caleigh (Host):**
When I was looking you up, it was saying how you are just like a internationally known speaker. And I can hear that because your passion is, is so deep in you. And I think that's what's, you know, so impactful to people who listen to you. It's because you understand the Need. And you feel the need every single day because of your decline in your health. And seeing our friends, right. We also are seeing people that we love in the cystic fibrosis community decline as well. For me, I also felt like I sort of missed out because I was a little bit too early in my progression of disease with cystic fibrosis. And so it is hard, you know, watching them run by is. Is a little bit tough. So how do you mentally conquer that hurdle of being that 10% or more, as you're saying that feels left behind?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
It's a good question. People often ask me this and I sort of, I struggle a little to answer because it's just very complicated. So I feel, and I think many of us in the 10% feel pure happiness, like nothing but happiness and joy and relief for so many of our friends who we see doing incredibly well on CFTR modulators, living the lives they dreamed of. You know, going back to graduate school, starting careers, having families, running marathons, traveling the world. I mean, it's incredible to see. And there is nothing in the world that I would change. I wouldn't change that for anything in the world that is so impactful. I think it also shows us even beyond the immediate impact on people's lives, it shows us what's possible. So it shows us what medicine and new therapies can do.

And you know, I know in the early days of developing some of the vertex drugs, when they got on stage and talked about these small molecule drugs treating the root cause of cf, they were laughed off the stage. And that's another story I think about all the time, because sometimes when you're trying to do really bold things, people don't initially get it. And if you, you have to have conviction in your beliefs and keep at it. And so, you know, sure enough, they proved right. And these modulators have been game changing.

And yet, you know, being part of that group that doesn't benefit, I don't feel any jealousy. I don't feel anything like that. I just want it too. I want it for me. I want it for every other person like me. I want it for everyone who loves a person like me, who just wants to dream free and big and live a life that's not constrained by cf. So I think it is just this very, like, nuanced thing of being so happy for the people that are benefiting and just wanting to sort of like jump over the line to join them too.

And so for us, that's what we're trying to do is to Remove every single operational barrier, align all of the incentives and make the race towards breakthroughs for everyone with cf and really the final group that isn't benefiting. Make that happen as fast as, as we say, superhumanly possible.

And we want to do it. We are open to unconventional ways of getting there. You know, we don't know what it looks like, but we want to do everything and whatever it takes to get there as fast as possible because people's lives are on the line and you know, cf it resists negotiations and even when you try really hard, as you know better than anyone. So, yeah, it's just the life saving effects of the other CFTR modulators are both our fuel and our hope. And also, you know, feel so tantalizing. They certainly are super motivating. But I would be lying not to say that, you know, there are days when I'm really not feeling well and particularly when, when the first modulators were, when trikafta was approved and I would log on to Facebook and see people recounting every improvements they were making every day as I was making, you know, as I was like having losses every single day. And it was still astounding and, and so gratifying for me to see what was happening to them. You just want it too. You just want it to. It's a them and you know, we want them to have it and we want to have it too. That's all.

**Caleigh (Host):**
You use the word hope so many times there. And I think that is right, that as medicine and science is advancing, like you're saying, we're seeing things come out, whether it's for us or somebody else. I guess I should say it is hopeful because we're seeing that there's advancements, we're seeing that like you're saying the possibilities are there. I talk about how when I was little and I was growing up, my mom would always tell me, “there's going to be a cure one day. Don't worry, you won't always feel this way. You'll get better.” And I just used to hate it. I hated it because I thought, why are you giving me this false hope? Why are you lying to me? Why are you putting that in my mind when I shouldn't be thinking that way. I should actually just be thinking of how to care for myself best, how to live a life with cf, not how to look beyond it, basically.

But this hope is big and it's, it's fueling, like you said, and you said once that you can't dream when you're just surviving. I can relate to that so much because surviving for over a decade and being in the hospital more days than home and having to spend hours of your life on antibiotics, doing treatments, doing all of the things that we have to do every single day. I also don't think people realize it's not taking pills and moving on. It's taking pills, doing nebulizer, doing cpt, doing antibiotics, sorting pills, calling insurance pharmacies. I mean, the list goes on and.

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
Then as soon as you get done, you have to start it all again.

**Caleigh (Host):**
Exactly. It never stops. It's a full time job and more. And on top of our medical regimen, we also need to live a life and we need to be able to dream. And it's hard because without dreaming, what is the motivation? Right? Because dreaming doesn't just mean one self made goal for yourself. It doesn't mean success in a career. It can mean whatever you want, basically. It can mean that.

But a lot of times for me, I know that my will to live and my motivation was just surrounded in my loved ones, especially the people that were with me every single day, that were my caregivers, that were suffering with me. I don't think they were suffering any less.

And you talk about that a lot, that you're so close with your family and that you know they're suffering the same pain as you are. But you know, advocacy becomes more than just raising awareness because it becomes a lifeline for many of us. It's a skill, it's a fight, it's a form of resistance developed over years of navigating systems and demanding access and holding onto hope. And when every breath is a battle, how do we reclaim this space of dreaming? Are you able to do that? Can you give like a tangible tip maybe that somebody listening out there might need right now?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
Well, you were saying before about, you know, the tension with your mom around false hope and being realistic resonates with me because I do think that we have this like really delicate dance between hope and grounding ourselves in reality. And I think the sweet spot is somewhere in between there, like maybe vacillating between is sort of being grounded in the reality and having faith in the hope. And so I think that is really the space that I occupy.

What gives me the most hope is really two things. The first is science. I believe in science. I have had the privilege of meeting so many of the researchers on the front lines developing these breakthrough therapies and researching earlier stage therapies that will become the breakthroughs of tomorrow. And they are brilliant and they are deeply compassionate and invested and really the heroes. Because, you know, we didn't get to choose this disease, we were born into it, but they chose devote their lives to this disease. And so their investment and their brilliance gives me immeasurable hope. And so I believe in science and I believe that we will get there. And I think the question and where I think we have the ability to change things is just how fast.

And then the other thing that gives me hope is that I believe in people and I believe in the kindness. And I've seen through Emily's entourage the way people step up and rise and want to be part of something, change making and care so deeply. Like, most of the people that are involved in Emily's entourage have no personal connection to cf, but they care about people. And I think the goodness of humanity gives me a lot of faith too. And so I think that it is a marriage of people being kind and wanting to be part of something great. And the brilliance of researchers and the power of science, when that comes together, I think it makes magic. And so that's where I get my hope.

**Caleigh (Host):**
I'm processing how you said that we were born into this disease, but there's people out there that are choosing to dedicate their life to this disease in order to help us. You, me, the community. And that's really special. I just want to stop and thank everybody who's listening that is doing your part somehow and rising up, as you're saying, and in any way possible. You know, it can be small, it can be big, but every action matters. And you and I see that every single day with. With organizations and with science and with medicine and all the advancements. It really takes an entire village and then some. It takes a lot of people.

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**

Yes, it does.

**Caleigh (Host):**

So thank you to everybody out there.

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**

And I just want to echo that. I love that you're saying that because it takes a village, and so many people give so much. And whether it's big or small, it's all big. It's all big. It's all essential. You don't have to be a brilliant CF researcher. You could be. It could be all sorts of different things. It could be connections to people, new ideas, galvanizing support from the community, spreading the word. I mean, there's like, it could be sending a message of gratitude. And you have no idea the ways that when we get messages of gratitude from people in the CF community that just say that what we're doing and having a group behind them gives them hope, like There is nothing that feeds us more than that. And so we always say in every single person has something critical to give. And so thank you to the researchers, the doctors, but also the everyday people who allow their hearts to be accessed and do something to step up and show they care. It's all so meaningful.

**Caleigh (Host):**
And to you and I and members of the CF community, we are clearly passionate about finding a cure for the 100% of individuals living with cystic fibrosis. And we know why.

It's because we live with it, right? We, we're seeing this, we're living it. We're living the suffocation and the complications and the days and years of our lives that sometimes feel wasted because you're not doing what you want to and you're making sacrifices that you don't want to and spending time doing the things that we don't want to because we'd rather be doing something else.

But how do you get people to open their hearts and give you access to their hearts that maybe don't know about cystic fibrosis? Maybe we can share with listeners what are some things that we can do that we can get out into the community and just raise our voice and share?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
Yeah, well, so people find this really surprising when I say it, but I'm actually a very private person. So I am really not someone that ever used to broadcast my CF story or it's not really comfortable for me to be sort of front and center and whatnot. And the only reason that I have continued to share my story is because the thing that I care about most in the world is our goal. Our goal of getting life saving therapies for every single person with cf. And I have found that sharing my story and sharing vulnerably helps us get there. It's really effective.

I think what makes people open their hearts is connection and relationships and emotion. And you know, it may be you and me and the other people at CF that are in this position, but we represent something so much bigger. I mean, we could be anyone's sister or wife or child or mother or best friend. And it's not even just about cf. It's about any person who feels marginalized or left behind or silenced or forgotten. It is our shared story. And so I have found that opening myself up, even if it's uncomfortable and sharing my story and putting a face to, you know, to the 10% and, and to out like, to our collective remaining needs in the community is effective. And so I will do whatever it takes. Like I said, you know, I will do whatever it takes to get to the goal. And so that has been an effective strategy. And so. So, yeah, sharing and talking and telling my story and encouraging other people to tell their stories. I think we don't always realize how powerful our voice and our stories are. People will often tell you they want to hear statistics. I find that at the end of the day, what moves people most are just human stories.

**Caleigh (Host):**
I totally agree. I think being open and vulnerable is basically our biggest power because sharing our story can help so so many people and move so many people. And it's about education too, right? It's about sharing the things that happen to us, so maybe other people can learn from that.

Let's shift a little bit to the future of advocacy within cystic fibrosis and. And your views on that. As treatment advances and the community evolves, what do you see as the next frontier in cystic fibrosis advocacy?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
When you say advocacy, I mean, to me, I'm very research and therapeutic development focused. There are certain populations that don't benefit from the breakthrough therapies.

And I think for me, the most urgent unmet needs that I think require the greatest advocacy moving forward are, you know, those that don't benefit from modulators. And there's a lot of reasons that people don't benefit from modulators. So it's those that are genetically ineligible, which is like really the final 10%. But it's also the people who have intolerable side effects and have to either come down on the dose or stop the modulators altogether. And also those that don't have optimal responses, some people are just not. Don't see a big benefit for reasons we don't really understand. It's also the thousands of people worldwide that don't have access to modulators.

And so, you know, a medicine is only so miraculous as long as you can take it, but if you can't take it, it's not doing much for you.

So we have huge, huge challenges that remain. And then on top of that, even for those that are on modulators and are benefiting from modulators, they are not a Cure. And the CF continues to progress even when people are on CFTR modulators. And so we've had progress, amazing progress for 90% of the population.

And 90% is great, but it's not good enough. And so I think for me, the biggest need for advocacy is getting to 100% and addressing all of the reasons that people may not be benefiting from existing modulators. And then reaching beyond, because control is not the goal, cure is the goal. And so continuing to push for what the therapies that can get us beyond control, you know, gene therapy and MRNA therapy and gene editing and all of that.

And we are making a lot of progress, but there is still a lot that remains to be done. And so I think we need strong support. We need people signing up for clinical trials so that we can get answers quickly. But we need to stay connected and we need to stay tight and we need to stay motivated because we're not there yet, and there are still a lot of people that are continuing to suffer and die, and that's not okay. And we can do better.

**Caleigh (Host):**
You mentioned that people can sign up for clinical trials. Are there other ways that the community members can get involved in a way that's bigger or more needed or more urgent? I guess I should say to not only your goal, but maybe the goal of cystic fibrosis community at a grand scale.

You're so involved in medicine and science. I feel like you have such a good mind for this, steering people towards, you know, taking action.

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
Yeah, well, so I will say all of the things that we are reaching for are for the greater CF community. So I do think we recently came out with our clinical trial connect patient database. So it is for anyone that does not benefit from a CFTR modulator, whether that is from an ineligible genetic mutation or side effects or suboptimal response. And so that is a database that you can sign up to and you get alerted in your own inbox when there are trials and that may be relevant to you.

And so I encourage everyone on our website to sign up for that. It is free, it is open to everyone all around the world, in addition to all the other ways you learn about trials. A lot of times we've heard people hear about trials earliest through us, and it is a way that you can get it right in your inbox. You don't have to rely on anyone else to relay the information to you. And so I think that is one important way, and that is all part of sort of our belief that nobody has a bigger vested interest in your outcomes than you do. And so you deserve to have the information and tools to pursue clinical trial opportunities yourself. So that is one resource.

The other thing is I think that we're really lucky in the CF space to have so many different organizations that are doing critical work for the community. Your support, whether it is financial, whether it is liking posts, commenting on posts, sharing messages, is so essential. And we are one of those nonprofits, and there are many others out there. And I can tell you that support from the CF community in all forms is so important and so meaningful.

So I would say I hope you choose Emily's Entourage, but there's lots of other great organizations who, whatever your organization of choice is, throw your support behind them.

And whether that is in raising money, giving money, liking and engaging in their post, sending messages of encouragement, engaging in any way with those groups and especially some of the smaller groups, it is really impactful. And also sharing the message with your other CF friends is really helpful as well.

**Caleigh (Host):**
Just really quick, I'm going to jump in and share your website with everybody. It's [emilysontourage.org](http://emilysontourage.org/) so go there to sign up for the newsletter. I highly encourage you to sign up because you don't just have to commit yourself to one organization either. You should dip your toe in all of them, dip your feet, jump into all of them. Because the more resources that you have, the better you can educate yourself, and the better I believe you can advocate for your own health or the health of somebody else. So, again, that's www.Emily's [Entourage.org](http://entourage.org/).

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
And we are also Entourage on Meta, Facebook, Instagram X and LinkedIn as well. And there's a lot of good content on there.

**Caleigh (Host):**
Well, thank you for everything that you and Emily's Entourage is doing. We all. We all appreciate it. And I want to go into some advice for our listeners. I think this is one of the best parts of this podcast, for me at least, is. Is listening to advice that we can give people out there who may be listening and battling illness in this very moment or experiencing burnout or just feeling overwhelmed. So how can advocacy actually be a source of empowerment rather than exhaustion?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
That's a great question. And it's something I contend with all the time. Because when you are working on something that is so close to your heart, I mean, like, in your lungs and not just about you, but, like, you know, I have so many friends I love so much with cf, and it can be a heavy place. You know, this year has been a brutal year for the CF community, and it. It hits deeply. It is so personal every single time and so painful.

You know, we have people reach. I have people reach out to me all the time with these incredibly awful situations that rip my heart out. And in those cases, when people reach out looking for financial support or help with some clinical need, that is not what we do at Emily's Entourage. What I do and what we do as an organization Is we have a whole list of different resources to provide, and we try to make the best connections we can to get them in the right place, but also be really clear that that is not within the scope of what we do. And honestly, their energy would be better focused, like in the direction of something of a group or a person that does do that and does it a lot better than we ever could.

So I think that clarity about what's in and what's out has been really essential. That is not to say that those notes don't tear me up. They do, and they're real. And it's awful and it's unfair, and I wish I could do something to help, but the best thing I can do is get them to the right place. I can see how effective our efforts are.

**Caleigh (Host):**
Were there any moments early on when you maybe doubted that mission and when you had to find ways that you could push through that doubt to get past it and push forward? Because I think think that anytime you start any sort of goal, whether it be advocacy or something else, there's a lot of pushback in the beginning. And it can feel discouraging and it can feel like maybe it's even a sign to stop, but. But that's not reality because we know that, you know, a lot of businesses had pushed back and like you're saying vertex sharing, you know, these gene modulators, in the beginning, they were last off stage. I mean, I've never heard that story. And I believe it because I'm turning 35 this year. So I know what it's like to think, you know, that this would never be possible, seeing these drugs.

But now seeing that they're here, it's like, wow, they were laughed off. That's crazy because it's, you know, it's a life changing drug. And so what are some ways that you've pushed through the doubt?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
Yeah. When we started Emily's entourage, like I said, we didn't set out to create a nonprofit organization. That wasn't like our dream. It wasn't in our life plan. You know, I was working at the time at Penn. I had a job. It was not part of the, like, roadmap for my family. But we, you know, through a series of different occurrences, became convinced of the need.

And in those early days, when we talked about what we wanted to do, countless people told us that it was impossible, that it was really hard, and they weren't wrong. Virtually all nonprofits fail. And that probably is statistically true.

There were just tons of people that didn't believe, and they weren't wrong to have doubt. I mean, there are lots of nonprofits that form and then can't sustain. It is 1 million times more challenging than you would ever expect. And then it looks on the outside. And I tell people all the time that if there is something that you want to do, I think starting a nonprofit to do it should be your last resort. You should explore. If there's someone else doing it that you can join forces with. If there is another group that you can get behind, like find ways to not create new entities, I think that is definitely the way to go. I think fragmentation is a real challenge.

And the only reason you should start a nonprofit is if you cannot achieve what you see as a really important goal, it should be driven by need. If there is a need that no other group is addressing or is addressing in the way that you believe it needs to be addressed or at the pace that you think it needs to be addressed, that is the only case in which you should start a nonprofit.

The reason to start is because of need and an inability. There's no other groups that are doing the thing that you think needs to be done in the way you think has to be done. And so we.

We listened to all the naysayers. They had very legitimate points. And then we just kept doing the thing that we thought needed to be done. You know, we were polite and we. We listened, but we just kept. We had strong conviction that this had to be done, and that if no one else was gonna do it, that it was on us.

And so we had no idea where it would go. We had no idea if it would fail or succeed. And honestly, I think in a lot of ways, the incredible success that we've had is more shocking to us than, like, no one is more shocked by it than we are.

But I think what our superpower was is that we knew exactly what we wanted to achieve. We knew it from day one, and there was never any uncertainty about the goal we were aiming for. And so, although we had no idea how to get there, we knew exactly where we wanted to go.

And so I think that you should doubt yourself. You should question all the things you should see. If the way that you want to go about the thing that you want to do is the smartest way to do it. If you feel like your plan makes sense, then you gotta fight like crazy to make it happen.

**Caleigh (Host):**
You and your team at Emily's Entourage has accomplished so much by giving grants, by funding research, by having medications that are now being used on people in the cystic fibrosis community, which is so huge. What has been your proudest moment within the advocacy space up to date?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
That is a good question. There are a lot. There are a lot of proud, humbling moments. I think maybe this isn't my proudest moment, but the wildest moment I ever had was I was out of the country on a trip. This was a long time ago. I think it was 2015. I was in Italy, and I got an email, and it said it was from the White House. And it was really weird letter. I'm pretty sure this is spam, but I just want to confirm. And she was like, this is absolutely not spam. And it turned out that we were named White House Champions of Change by President Obama and invited to the White House to be part of the Precision Medicine initiative and, you know, speak on a panel. And it was the most insane experience of my life.

And first of all, the opportunity to put CF on, like, that kind of screen was huge. And I felt so honored to be able to do that and so excited to do that. And then just the recognition that what our community and entourage was doing was so trailblazing and was leading the way for other diseases and other people. It was just in honor of the highest order. And I never in a million years expected myself to speak, like, at the White House. And we remained really involved with that initiative during the entire administration. And then also to be named alongside the other champions of change was really, really meaningful. So that was the wildest experience of my life, because just never in a million years would have expected that or knew it was coming or it was a total shock.

**Caleigh (Host):**
I can't imagine what that feeling was like. The amount of adrenaline and also the amount of impact that you were making is just. That's insane. And you guys continue to make impact every single day.

Did you get to meet Obama?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
Well, first of all, I just have to say that while, like, Emily's entourage was recognized, it is really like we were the ones that went there, but it was a recognition of the whole community's efforts and dedication and progress. And so we really felt like we were there as representatives.

I did not meet President Obama. I didn't meet him. I didn't meet him there. But as part of the initiative, I went back to the White House a number of times. We were very involved in. In the initiative. And right before President Obama was stepping down, we were invited to this amazing conference called Frontiers.
It was in Pittsburgh, and I was actually very sick at the time, and my mom had shingles. And we were, like, we were invited, but we were, like, so under the weather. We were, like, not sure if we were going to go. And finally at the last minute, I heard whispers that President Obama was going to actually be there. And so we, like, hobbled into the car. Like, we were a total mess. My mom was covered in ice. I was, like, hacking up a lung. And we drove. And it's like a long car trip from the Philly area to Pittsburgh. And so we drove there, and we were like, he better be there. And so, sure enough, he was there. He spoke for about two hours. He gave the most incredible talk about science, everything from, like, planets and outer space to precision medicine, and it was mesmerizing.

And then at the very end, he walked past the stage and he shook a few people's hands. And my mom, in what was probably, like, the greatest demonstration of, like, a mother's love, she, like, we were all in the front, and as he walked by, she, like, pushed me forward and he picked my hand, and so he shook my hand. I am not a very starstruck person. Like, I don't. I have to say, it was one of the most meaningful experiences of my life. And everyone, and you'll appreciate this, everyone was like, you must have never wanted to wash your hands. And I was like, oh, no, you do not know me. I like, I savored the moment, but washed my hands immediately. That guy shakes a lot of hands. But that was very special. It wasn't my proudest moment, but it was a very special moment.

You know, the phage therapies that EE has developed that have been used by people and treated antibiotic resistant infections that were otherwise untreatable. That is a proud moment. Or when we heard that the first patient was dosed with a gene therapy by a company that we spun out. That was a proud moment. And there have been a lot. And I guess I feel proud not on behalf of myself, but on behalf of. Of the entourage and what we've collectively accomplished. And I do feel really, really. I do feel really, really proud.

**Caleigh (Host):**
You should. I think I just keep saying it's really incredible what you guys are doing, and it gives me chills because watching your videos today and I had your YouTube up, and I was walking the dogs, and I was listening and, like, glancing down at it, and I was. I was crying. I was happy. I had goosebumps. I mean, you guys really are making such a strong impact on the people in our community. And not just the community, but the world. Because you are showing people that it's possible to start in your living room and rise up and become a huge nonprofit that can benefit so many people. So thank you for sharing with us that there's this hope possible and that anybody can really do it as long as you have this, like, goal in mind. And as you said, you knew exactly from the start what your goal was and what you could do, and it's really incredible.

So every podcast at the end, as we wrap up, I ask a few questions gathered from the community. These are questions that I posted on a story on my Instagram @Fight2Breathe, that you were coming on to speak about advocacy, and these people asked directly to you these questions. So the first question is, as someone living with a rare mutation of cystic fibrosis, I sometimes feel forgotten. How do you avoid the inner thoughts from becoming dark?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
Yeah, well, first of all, I think those inner thoughts of fear and sadness are legitimate. And so I think I always feel like with feelings, you have to feel the feelings, and you have to not shame yourself for feeling the feelings. You have to accept the feelings or you should accept the feelings because they are. They are real and they are understandable.

And then for me, what is helpful is talking about it and then figuring out a way to do something to make it better. Like, to use your voice and to feel like you are contributing towards the solution. And I know that kind of, like, sounds annoying, like lip service to say. For me, it's cathartic to feel like I am part of the solution and I am doing something to change that reality that actually helps me deal with the feelings. And so different things work for different people.

And I think, you know, if that isn't the method for you there, I'm sure different methods that are important, I think, certainly, like finding support around yourself if that, you know, talking. Talking to friends or family or a therapist or whatever it is. I think it is important to voice the feelings so that they're not just in your own head, like, they can be shared. And, yeah, I think doing something about it is really the best therapy for me. And that is a lot of what Emily Entourage has given me, is a really powerful way to do something about this huge problem that we are facing.

**Caleigh (Host):**
That was perfectly said. That was a really great tip for everybody. I think it is very important to share your feelings. And for me, a lot of times when I was going through really tough times, I didn't necessarily want to share my feelings with the people around me because I didn't want to make whatever emotions they were dealing with heavier. And so I also used writing and art as a great form of just processing what I was going through. And so like you said, everybody's different. Find what works for you. And yeah, thank you for sharing that. That was really, really great.

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
I also still sometimes deal with dark and scary feelings. So it's not that they go away, but they can be sort of controlled. And I think also it's really important to just be gentle with yourself. It is a hard situation and it is only human and only natural and only healthy to sometimes have scary thoughts. So I think like not being too critical is also really important.

**Caleigh (Host):**
Absolutely. The second question from our community member is what's something you wish more people outside the cystic fibrosis community understood about this fight?

**Emily Kromar-Grolinkoff (CF Person, Founder of Emily’s Entourage):**
That it is not done and that we are. That we have a lot of important work to do.

It's not done for the 10% and more that don't benefit from modulators and it's not done for the 90% who have this life saving control but no cure.

And so it is understandable that a lot of time we like to sort of celebrate our progress and the progress should be celebrated. But I think we also have to remember the message to the greater community that though there's been progress, there is urgent work that needs to be done and we don't have time to wait. People's lives are on the line and so I think that is the most important message that I try to scream from the mountaintops about all the time. And I think it would be really helpful for the rest of the community to do so too. Because we need the world to know that, to help us get therapies and better therapies for everyone and eventually cures.

**Caleigh (Host):**
Well said. Thank you so much for joining the Our Fight to Breathe podcast because hearing your story and your perspective on advocacy really helps me personally and I'm sure helps so many of the other people listening in the community. So thank you and I hope you have a good day.

As we wrap up today's episode, I want to thank you, our listeners. Your stories, support and voices are the heart of the Our Fight to Breathe podcast. If you're living with cf, a caregiver, a medical professional, or simply someone who cares, your experiences matter. Sharing it helps build a stronger, more informed and more connected community.

Follow, share and join the conversation on fight to [breathe.org](http://breathe.org/) or on socials at Fight to Breathe that's F I G h t the number 2b r e a T H E Every action, big or small, drives awareness and change. Thank you for being part of the fight to Breathe Youth community. Your voice matters.

And a heartfelt thank you to the Cystic Fibrosis Foundation's Impact Grant for supporting this podcast.