018 - Marc Ginsky COO of the CF Foundation

My guest today is Marc Ginsky, The Cystic Foundation's Chief Operating Officer.

On this episode we talk about the amazing research the CF Foundation is currently collecting, the community the Foundation has created, the lives it's currently saving, and the amazing lessons learned from working with such an amazing organization.

Here's our chat. 

CFF.org
@CF_Foundation

Foundation Links:
About CF – Learn more about cystic fibrosis, a genetic disease that affects the lungs, pancreas, and other organs.

Our Mission – The CF Foundation will not stop until CF stands for Cure Found.

Path to a Cure – The most important work in CF is still ahead. Learn more about the research we are funding to reach treatments for all and eventually a cure for cystic fibrosis.

Get Involved – There are so many ways that you can get involved with the Cystic Fibrosis Foundation. Attend an event, donate your time, or donate to the cause so we reach a cure for cystic fibrosis.

Find Your Chapter – Find your local CF Foundation chapter and learn how you can get involved in your community.

Tomorrow’s Leaders – Join Tomorrow’s Leaders, the CF Foundation's young professionals group that provides opportunities to connect with others, learn and grow personally and professionally, all while making a difference in the lives of those living with CF.

Advocate  – Volunteer advocates drive our legislative and regulatory agenda forward at every level of government. Together, we are improving access to high-quality, specialized care so people with CF can live longer, healthier lives. 

Transcript

SPEAKER_01 0:00

Welcome to the Choose Your Attitude Podcast. My name is Nicholas Strand, founder and CEO of Choose Your Attitude. I am your host today, and it is such a privilege and honor to have you listening. Thank you. If you like what you're listening to, please hit subscribe either on your podcast audio and/or we're also streaming on YouTube. Come and watch us and subscribe, share us with your friends. It means the world. And as always, leave us a review because we love to hear what you have to say about it all. Today's podcast, I could not be any more excited. We have Mark Ginski on here. He is chief operating officer for the Cystic Fibrosis Foundation. They have done so much to help cystic fibrosis patients throughout the world. They're keeping it in-house, doing the research and doing the work, and it is just so amazing to see these advances come through and to be able to see them directly, be able to celebrate directly. Through this uh episode, it's gonna be so great to hear what the foundation is doing, why you should be involved, and we got a special announcement at the end. Or let's get to it. This episode made possible by viewers like you and of course of our sponsors. This episode is brought to you by the Choose Your Attitude brand, a premium encouragement brand. Choose your attitude is a community that champions the idea that attitude is a choice within everyone's grasp. A brand isn't good without a logo, and boy, does choose your attitude have a meaning. Turn it on its side, it's an hourglass for time, two hearts for community. The one on the left is your past, while the one on the right is your future, lifting up your past. And of course, the butterfly effect. Although we can't control the trials and tribulations we go through in life, we do control how we approach them with the power of choice in our attitude. Choose your attitude is a premium encouragement brand that offers men's and women's apparels and accessories, lots of selections, and for our podcast listeners, we're given 20% off your order. Use the discount code podcast20. That's podcast20 for 20% off your first order. Go to chooseyourattitude.com. Again, that's chooseyourattitude.com and shop now for that premium encouragement. If you want to be a sponsor of the Choose Your Attitude Podcast, email us at podcast at chooseyourattitude.com. Again, if you want to email us and be a sponsor on the Choose Your Attitude Podcast, please email podcast at chooseyourattitude.com and we would love to have your support. Now let's get started. Let's roll the intro.

SPEAKER_00 3:15

Let's step back a little. Take a look inside our true self. Get comfortable in the uncomfortable. And let's embrace our reality. Life is tough, but so are you. Welcome to the Choose Your Attitude Podcast with Nicholas Strand. Join Nick, author of Loving Someone Who's Dying, as he shares his experiences of life lost to life on the road as a traveling roadie. He and his guests will get into real topics while encouraging you to let go of the past, lift up the present, and fiercely build your better tomorrow. Let's get through this together. Now, here's your host, Nick Strand.

SPEAKER_01 3:56

Welcome to the Choose Your Attitude Podcast. Again, my name is Nicholas Strand. I'm excited to have Mark Ginski, who is the Chief Operating Officer of the Cystic Fibrosis Foundation. Thank you so much for being here today. Welcome to the show.

SPEAKER_03 4:11

It's my pleasure. Thanks for having me on.

SPEAKER_01 4:13

So I was introduced to you not only from the idea of Brianna having cystic fibrosis and our connection with the foundation, um, but also I was interviewing uh uh John Sardella, who wrote uh an amazing book, um, Journey Without a Map. And we're interviewing, and come to find out, he grew up with you.

SPEAKER_03 4:36

Yeah. John and I have been friends uh since we're 10 years old. So that's uh that's coming in on 48 years of friendship. So we've been friends for a really long time, and uh I couldn't believe it when I got the phone call from him saying, You're not gonna believe it. I was just doing this podcast, and this guy this guy was talking to me, and and his wife had CF. I said, Oh, alright. And uh been able to speak with you a few times since then. It's been a pleasure. So you were an active part of the community, so well, I appreciate it. Talking to you.

SPEAKER_01 5:08

For sure. I I appreciate you. Uh, you know, we've like you said, we have had amazing conversations, and that's kind of why I wanted to uh bring it to the podcast and help share a little bit more about the community. Uh, can you tell us a little bit of how you got to the CF Foundation and kind of a little bit about you before we dig into the CF Foundation?

SPEAKER_03 5:27

Yeah, sure. Um so I I'm a lawyer by training, so don't hold that against me. Um I had uh a little over 20 years ago gone to work for a company as a lawyer, and the company focused on doing drug development and commercialization services for pharmaceutical and biotech companies. And I'd been with them for spent about nine years as a lawyer there, and then I was uh I'd shifted over to the business side and I was leading a division of the company, and I got a phone call from a recruiter who was interested in filling a role at the Cystic Fibrosis Foundation. And the honest truth is I returned the phone call because I thought it would be terrible karma not to return a call from a charity. Um, and I I returned the call to say, no, I'm really not interested. And she asked why, and I was honest about it, and she said, Well, I think this isn't a normal charity. You might want to just listen for a little bit, and I decided to listen for a little bit. And the more I learned about the Cystic Fibrosis Foundation, um the more I realized that it is unusual in lots and lots of ways, and it became more and more attractive. Uh I just had my five-year anniversary about three weeks ago, and it has been uh by far the most fulfilling and rewarding five years of my career. Nothing has even come close to being as filling me up as much as these last five years have. It's also been a remarkable time in the transformation of the disease, so it's pretty good timing.

SPEAKER_01 6:49

For sure. I mean, it it's gotta be fulfilling to uh, you know, have not only a career where you put your time and energy into it, but also to be able to see how it's giving back to so many people.

SPEAKER_03 7:02

Yeah. When I when I when I joined, you know, I didn't I didn't know anybody with CF. Um and uh what I had hoped for was that the mission would would have some meaning for me. Um and I've gotten to know so many families and so many people with CF and so many that have suffered loss, and I have uh unfortunately I've been to funerals of people that are far too young to pass. And this is no longer an abstract concept to me. This is this is personal, this is viscerally personal, and um, you know, I really do care, and it has been very fulfilling to see how far we've come. Uh, and yet we still have so much work to do, and there are still people that are passing far too young, and the quality of life is not where it should be. So we still have a lot of work to do.

SPEAKER_01 7:51

It's it's amazing though to see the progress that has happened, like you just said, even within the last few years. I know when Brianna was born uh at three years old, she was diagnosed, told she'd lived till 13. Now that is extended, and especially with the drugs like auracombi to trifecta, um advances are just going crazy.

SPEAKER_03 8:16

Yeah, if you if you step back, I mean it the median life expectancy now is in the 40s. Um but that only really tells kind of part of the story. These drugs, um, it all started back in you know 2012 with a drug called Kaleidoco, uh, and then Orcambi, as you mentioned, and then Symdico, and now Tricafta. These drugs that that address the fundamental genetic defect that causes CF have fundamentally and forever altered the lives of most people with CF. Um and young children born with the disease today, first of all, unlike Brianna, they they should be diagnosed at birth, which makes a big difference in how they're taken care of. Um because newborn screening is everywhere now, and um we have every reason to believe that they're gonna live not till their 40s, but till their 50s, 60s, 70s. They're gonna live a normal lifespan, and um which is remarkable. There's still work to be done to make sure that that lifespan has the quality that all of us expect, those of us who do not have a disease like CF, um, but it is truly remarkable how far we've come in a in, you know. But it is the foundation is in its 66th year. It's not as if this happened overnight. So it took a lot of work and a lot of years.

SPEAKER_01 9:29

The the progress that has happened, um, you know, they've they've I I've seen many people set the foundation aside from other foundations because this one is uh in a step above the others because of how advanced they've become in their not only the fundraising, but also so much effort into the research um and being a part of that. Can you talk a little bit about that?

SPEAKER_03 9:57

Yeah, so you know, if you if you step back in time, if if if I have time to tell a history lesson, if that's it. Oh yeah, for sure, please. All right, so you know, 1955, a group of parents get together and they say, This is not acceptable. We're losing our kids, you know, before they're 10 years old, and something has to be done. And this group of parents gets together and they they build a community. And everything that the foundation has done over 65 years now is is because of this community of people. And Nick, you were part of that community, right? You you and Brianna were active parts of the community. The the first thing that they decided was you know, people don't understand this disease. We need to get better care for our children. And they they took all of the money they were able to raise in the early 1960s and they they invested all of it in a study to prove that multidisciplinary care, that caring for CF wasn't just about the lungs or just about the pancreas or just about the uh any particular organ, but it was the entirety of CF that you needed multiple disciplines, that that would result in improvements. And they were right. And that gave birth to this idea of a care model and a care network. And they started to fund hospital centers around the country to take care of people with CF, very specifically take care of people with CF with pulmonologists and other doctors that could focus on the entirety of the person. And then they started to realize that they needed to have a better understanding of science. So here they now they have these doctors around the country who are gaining understanding of the disease, and they started to fund research by those same doctors and scientists, and that research program continued to grow and grow and grow and grow. And then it gets supported in the late 60s, early 70s. They start to gather data on patients and they started the a patient registry, which at the time nobody was thinking that way, but data is the key to everything in science, and they started to gather patient data, and we now have patient data that goes back 50 years that we can study the progression of the disease. And then in the I'll I'll jump a whole bunch of steps in the in the late 1980s, um 1989 to be specific, um, research partially funded by the foundation, partially funded by others. Um, the CF gene, the gene that causes the defect that causes cystic fibrosis, is the first gene that is fully characterized by scientists. And uh one of those scientists is a guy named Francis Collins. He's been in the news an awful lot lately. He's Tony Fauci's boss at the runs the NIH. And he is one of the co-discoverers of the CF gene. He was at the University of Michigan at the time. Um, so go blue. And um the CF gene gets discovered, and the CF community is rejoicing, and they're thinking, well, now that the gene's been discovered and we're on the front cover of magazines, we're just a few years away from a genetic therapy that's going to cure CF. Well, that that's just not true, obviously, right? So that's 1989. So in the early 90s, frustration starts to build that there's no progress. Right? We now we know the gene, we've got all this scientific understanding, we've been investing in basic research, and nothing is happening. Why aren't drugs being developed? Why aren't cures being developed? So the foundation then took a very bold step and they went on some very, and all through these years they've been fundraising and running events and raising money. Um, they took a very bold step and decided that even though they didn't have a hospital building or brick and mortar, that they would run a capital campaign and start to try to fund research by companies to develop drugs, to take the risk out of drug development. And most drugs don't make it through development. So they they started a concept called venture philanthropy. And what that means is the foundation would approach companies and say, if you'll focus on CF, we'll pay for you to do it. And then, if by the way, you're successful and you bring a drug to market, well, you can you can pay us back and then some. And the most striking example of that is those drugs I mentioned earlier that are all vertex drugs. Well, that was the result of the foundation approaching a little tiny company in San Diego called Aurora Biosciences and basically begging them to take our take our money to do what was called high throughput screening, to assess a bunch of molecules to see if they would have an impact on this CFTR, on the on the genetic defect that causes CF. And we invested hundreds, a couple hundred million dollars into the development of those therapies. Um the result, of course, is those therapies are now multi-billion dollar drugs, and Vertex, which now owns Aurora Biosciences, is is is all of their revenue comes from cystic fibrosis, and it has opened the door to uh lots of other companies realizing that focusing on an orphan disease and an orphan disease is any disease that has not a lot of patients. In the US, that's defined by about 200,000. And there's only 35,000 people with CF in the US. It's opened the it's opened the floodgates of companies that want to invest in developing drugs for orphan diseases like CF. And we continue that approach of venture philanthropy, and it's evolved uh over the years, and it's getting more and more sophisticated as we continue this journey to facilitate a cure. And a treatment is not a cure, and right now what we have is some good treatments. They don't work for everybody, they work for about a little over 90% of the population, but not everybody, and we're in this for everybody. Um so this idea of venture philanthropy, which is now copied by a lot of charities, um, has fundamentally altered the research landscape for CF. So it's been a remarkable, remarkable journey, but it didn't happen overnight.

SPEAKER_01 15:40

For sure. It's it's it's definitely a magnificent uh effort that has had past history uh to continue, and it's amazing to see not only are they doing the work to bring in the support, but at the same time literally doing the work um to actively find a cure, and that is that is magnificent. And um, you know, I I I will admit like it in some sense it I was trying to find the word, and I guess the word that comes to mind would be sad, but um it's tough not to have Brianna here to see the most recent uh uh updates um because they're they're monumental updates, they're not small uh advances, they're huge. Um you know, some of them allowing uh you know kids that once they're born to, as you said, you know, not have anything close to the challenges that you know people like Brianna faced.

SPEAKER_03 16:36

Um it's bittersweet. You know, it's um what the CF community paid forward. What's remarkable to me, and I will put you into this category, is the people that have um suffered a loss like that and continue the fight for others as a way of honoring uh the person they lost. And that I am I had coffee this morning with one of our Board of Trustees members who lost his daughter to CF years ago, and yet here he is devoting his time, energy, effort, and money um to the fight still, all these years later. And um it is, I think it is a tremendous way of honoring you know, none of this happens without the past. It's not um, and uh it is a remarkable story of perseverance. And I wish she was here too, because she well, for two reasons. One is she'd enjoy seeing the progress, but she'd benefit from the progress. You know, it it it's it would make a fundamental difference in in both the quality and the duration of her life.

SPEAKER_01 17:39

Um the the transition, uh just to kind of share how close we were, um March, so she passed in May, and March was literally that transition period where we were trying to do auracombi. Um we had actually she had the obsessive drugs, we had taken the IVs out, and she was she had just got the first box of auracombi before you know the infection hit um and and kind of took over. But it's um it's exciting though as I talk to other CF patients and see the progress, um, you know, because it's it literally, you know, to to hear some of these patients talk about breathing in a way that they've never felt before. Um I mean that's that's very uplifting and encouraging and uh exciting. Um how how close do you feel uh we are? Um I know you're not, you know, and you know, it's kind of a uh a genie bottle, but at the same time, like yeah, how do you how how do you feel about all that?

SPEAKER_03 18:44

Well, let's let's define what we have, I think, a little bit. So, you know, it's it's interesting. You mentioned obsesses, right? You mentioned an infection. And one of the challenges that that people with CF face is because the mucus in their systems is so thick, it is a breeding ground for infection. And ultimately, um thanks to advances in treatments like pancreatic enzymes, it's the lungs that really ultimately cause the demise of people with CF. And um as great as these therapies are, if you have infection, it doesn't make infection go away. It makes everything flow more freely. But once you've had one of those infections, as you know all too well, they have a terrible habit of coming back. So we continue to invest um tremendous amounts of money in research on better anti-infectives and better um better antibiotics and better treatments for those infections, because regardless of how good these other treatments are that are genetically modifying, so to speak, um they don't make the infections go away, right? So, particularly for adults that get on therapy, it doesn't reverse the lung damage and it doesn't make infection go away. It makes it less likely to flare up, um, but it doesn't make it go away. But what these treatments are, you know, particularly the most recently approved one, the one that was approved in October of 2019. Um October 21st, 2019. Not that that date stands out in my mind, um, is called Tricafta. And that was a step forward that made all of the others seem small because tricafta was highly effective, or CAMBI was a good drug, I would say. And Symdico was a good drug. Kaleidoco, which only worked for a very small percentage of people, was a great drug. Well, Tricafta is a great drug for a lot more people. So just to uh let me try to frame this out. So CF is one disease and it's caused by one genetic mutation, but uh a mutation in a particular gene, but there's almost 2,000 different variants of that genetic mutation. And um what Tricafta did is it it took the number of people that were eligible for a highly effective therapy from about 6% to about 93% once the label gets expanded to kids. And we are literally waiting any day for TriCafta's label to go to kids. I mean, we're literally checking, clicking on refresh all the time waiting to hear the news from the FDA that they've approved an expansion of the label to kids. Um so so you know now we have these treatments that are highly effective for you know over 90%. The problem that we have is that so the way these treatments work, I think the best way to think about it is if you're on a you're you're entering a highway and you've got a yield sign, and what what these drugs allow you to do is have a longer lane so that you can accelerate and and merge into traffic really easily. It allows the flow of chloride, it opens up the chloride channel and allows everything to flow better. The 7% for whom that doesn't work, what they they don't have a yield sign, they have a stop sign or or stop light, as the case may be. And and what we're trying To figure out now scientifically is so how do we get it to turn green or even yellow? And it's fundamentally different science. And um, you know, a lot of these mutations are referred to as nonsense mutations. And if you have two nonsense mutations, these drugs just aren't going to work the same way for you that they do for people that don't. So uh we have a long ways to go before we can develop treatments even for those 7%, and probably even further to go before we can develop a cure. So that our goal, our mission is not to have people taking pills every day. Our mission is to cure a disease, to, you know, uh it, you know, you walk into the doctor's office and you with CF and you walk out without CF, right? That's what we want. Um we're a long ways away, and we have a long journey in front of us. Um and in the meantime, even when we are able to develop those therapies, um, we have to be aware that people are gonna still need our help. They're still gonna have infections, they're still gonna have lung damage, they're still gonna need lung transplant. So unfortunately, I will be retired before we before we finish this job. Um, we have a long ways to go still, unfortunately.

SPEAKER_01 23:17

When you when you say that we're here and our goal is to find a cure, like does that give you goosebumps at all of like the effort you're working on? Or do you sometimes forget the significance of you know the team you're involved with?

SPEAKER_03 23:34

No, I I you know I enjoy my job because I don't forget. Um and you know, I don't forget on both sides. I don't forget on, you know, so you know, you talk about kind of the tangible things that come from a really good drug, right? So Brianna unfortunately didn't get on our combi in time to slow the decline. I met a young woman down in Florida in her early 20s, and she hadn't been eligible for any of the drugs before Tricafta. And I met her, oh, I don't know, about a year before Tricafta was approved. And I, and but it was in clinical studies, and I said, Look, if this drug is approved and it does what we think it's gonna do, and she she had told me that you know she had no sense of smell, she'd had a dozen nasal surgeries in her life. And um, I said, I want you to uh call me. I knew her parents, right? And I'd met her for the first time, and I said, I I want you to tell me what it taught what it what it feels like when you when you first smell a cup of coffee. And a week after that drug was approved, I look at my phone and there's a text with a video from a number I don't know. And it was from her, and it was just her smelling a cup of coffee. And it just uh, you know, to say it made my day would be like an understatement, right? Like it just the simplest things, the things we take for granted. So it's hard for it not to always be present. Um you know what I think about when I think about the idea of a cure, of going to people and saying, you don't have this anymore. Uh, yeah, it gives me goosebumps. And and and not just for people with CF. I will say, you know, the the path that we've that we've started for people with CF has benefited other disease foundations have have taken on a lot of the same approaches and they're starting to have some success. Um I think if we're able to solve the puzzle for this 7%, it will benefit hundreds of other diseases that have similar mutations that work in the same way. Um you know, it's why I like being in healthcare. I've been in healthcare now for 25 years. You know, it it there's something tangible to it, there's something real to it. It's it's um it's a very fulfilling thing, but no, I don't forget it's front and center. And it's front and center both from the perspective of unacceptable loss and from you know for hopeful, uh hopeful futures, right? So it's a little bit of both. You get you get it on both sides.

SPEAKER_01 25:51

It's uh it's challenging. Um I guess kind of to put it in layman's terms, it's um we've only been able to figure out how to figure out ways to try to preserve as opposed to uh fix. And so when these drugs get to somebody who's older, their lungs have already been affected, so it's kind of a a stopping point. Their lungs won't get better, but the challenges will decrease. Right. Um, and so the cure or trying to get to kids is huge because then it prolongs uh the effects on their lungs and allows them you know to live longer or fight longer, should we say.

SPEAKER_03 26:30

Um but a cure So I'm assuming, you know, for in a perfect I'm assuming Brianna took lots of pancreatic enzymes whenever she ate, right?

SPEAKER_01 26:37

Yes, yes.

SPEAKER_03 26:38

Like 30, 40 a day, right? Oh yeah. So there's some really there's some early studies where they are uh administering some of these drugs to children younger than six months of age. And they're they're finding that you take enzymes because your pancreas doesn't work correctly, right? They're finding that they can actually reverse pancreatic insufficiency if they can administer these drugs to children young enough. So, you know, when we talk about CF and you talk about the disease burden, it's you know, you as you know all too well, it's two to three hours a day and you know, 40 to 45 pills a day, every single day, 365 days a year for your entire life. And if, you know, if in fact we can get these drugs administered young enough to kids, they may never even develop that pancreatic insufficiency that requires all those pills, let alone having to not deal with the vest and airway clearance and all of the things that come with this disease. It's these are really good jokes, these are really special therapies, you know.

SPEAKER_01 27:36

It's uh it it's like I always explained it with Brianna, it's uh a full-on relationship. And to be able to, you know, step away from that and have less of a relationship and more of you know your life, that's that's exciting to see. It's funny.

SPEAKER_03 27:52

I I had somebody refer to the disease as her her time thief. Yep. She viewed CF as her time thief, and uh that what CF does to her is it steals her time every single day. And she explained this to me just as she had gotten her first portable vest. So she didn't have to be plugged into the wall anymore, she could take her vest with her and go places. On her airway clearance, yeah. So these vests for you know, yeah, I should explain. Um, what part of what people with CF have to do is airway clearance every day. And when before the vest existed, parents would pound on kids' chests and backs to get them to cough up the mucus. And now there's this vibrating vest that pounds your chest and allows you to do it. And they developed a portable one just a few years ago, actually. And this woman was saying, I actually take it and wear it with pride at the gym. That's beautiful. So she wears her vest while she works out at the gym. And uh, I just thought that was such a neat way of saying, I'm stealing back my time. I'm I'm I'm I'm taking back my time from cystic fibrosis. I thought that was such a cool way of thinking about it.

SPEAKER_01 28:56

Martin Deflinger, the inventor of that. Um, we actually I I've actually become close friends with him. Oh, um, we interviewed him uh on a few podcasts back. I think it was podcast uh episode nine.

SPEAKER_03 29:10

Um you can tell him that uh that tell him the time thief story then.

SPEAKER_01 29:14

I will forget that. I I one of the things I said is you know the freedom you've created, and that that was exactly his story is um you know the challenge of you know what CF takes from you, and he didn't want to sit there connected to these hoses in this full machine that does that. And so as a kid he created uh the vest, and um that's exciting to see that you know, even for that, um you know, it's it's that freedom. Um I do know, like just to kind of connect it with Brianna, that was one of the biggest challenges with her and the doctors, is exactly like you said, is you know, you sit there and the doctor will give all these regimens of breathing treatments to drugs, and you know, two to three hours of your day every single day, you know, that that adds up, especially when you want to live and the last thing you want to do is have to always struggle. Um and that was that was Brianna's challenge of finding that quality over quantity of you know how much time am I willing to put into this, um which is you know, not not in a bad way of uh uh you know saying, you know, she she was looking at the quality of trying to figure out you know how to how you manage that um because it's a it is a full-on relationship, and that's yeah, um that's it is it is a it's not there's nothing easy about CF.

SPEAKER_03 30:39

There really isn't. There's nothing easy about it at all.

SPEAKER_01 30:43

I I have to ask, um, for those that maybe aren't connected with cystic fibrosis, um, and as a person kind of coming into the foundation on the outside, yeah. Why would why would I want to be a part of this organization? Why would I want to support it? Why why am I so fond of it?

SPEAKER_03 31:04

Well, I I guess I I I'd point to a few things. I let's take it as a given that you don't know somebody with CF, right? That there's not a personal relationship. Um I am increasingly, you know, as I meet more and more people, uh, and again, I'm reasonably new in the philanthropic world, right? Five years into my journey. People want to give to things in which they believe their dollars have an impact on something. They don't want to just give for the sake of giving per se. They want to give to make an impact, to make a difference. You want that feeling of that personal feeling that you have contributed to something. And I think where the CF Foundation has done a remarkable job is in distinguishing itself is that the advances and developments that have happened have all happened with the support of the foundation, not independent of the foundation. Um, and you know, my perspective is by the way, when it comes to healthcare advances, I don't care how the hell they happen as long as they happen, right? And I wish these same advances were happening for countless other diseases that have touched me and you, and I'm sure everyone that listens to you in their lives, whether it be, you know, uh cancer or Alzheimer's or uh uh you know, whatever it might be, arthritis. I all of these diseases are terrible, and I wish I you just want to see advances no matter how. I think what CF does, however, is because the foundation has established this incredible ecosystem of care, of doctors and researchers, you know, um nothing happens without us. So we're a part of the story all the time. It it is, and that's a really powerful thing, so that you know that ultimately your money is going to get put to work and make a difference. Um, I also think that we're paying we're paving the path for lots of other diseases, and there's something to be said for that. That um as we continue to develop and succeed in doing things in different ways, others follow that lead, and hopefully they will succeed as well. You know, um, unlike my prior life at a public company, you know, I don't I don't view this competitively. I want everyone to succeed. Um, you know, I want all of these diseases to be cured. And um but I I think when you donate to the CF Foundation, you know, you get the benefit of being part of an incredible community of people that know each other uh in a way that is really deep. Um, and they're connected to each other both locally and nationally. And um ultimately everything we do is nothing but a reflection of the community. What I always say is that uh, you know, the cystic fibrosis is the most amazing story in medicine today. The community, they're the authors of the story, and those of us that are privileged enough to work here at the foundation, we get to put pen to paper on your behalf. Um so you know that's what that's why donating to the CF Foundation is is fundamentally different than others, is that you know we are directly making that difference. We invested $280 million last year in care and research. Um it is, you know, we are this little orphan disease. We're the little engine that could, if you remember that that kid, that children's book. Um, and we take pride in that. So I think I think it's it is a I've been around around healthcare a long time. It is the most amazing story in medicine. It makes no sense. How does this little charity supporting an orphan disease do this? It doesn't make any sense.

SPEAKER_01 34:32

It's um I will have to say there is definitely a direct connection. Um and and you know, that I've I've noticed with the CF Foundation compared to others, where when you when you donate to others, and now mind you, I I don't want to compare as a better than, but compare as an experience that you know when you donate to the others, I feel like um you know that there's not a direct connection. Where when you do with the effort with CF that like these drugs like trifecta and stuff like that, that celebration when the drug comes out, not only is it a victory of the step forward, but it's a victory of knowing that everybody in the community was a part of that. And that's that's exciting um to be able to share that.

SPEAKER_03 35:22

It's not accidental that I remembered that date, you know, the 21st of October, you know, to say that that was a day of celebration nationally in the CF community. And it happened to happen, it happened right before our large scientific conference. And I I can't begin to tell you what it was like to walk into that room. First of all, we were walking into a room, which is strange enough to think about now. Um, but you know, to walk into that room and see people just hysterically crying when they saw you because they were still so uh moved by that moment. You know, it was a it was a feeling that we accomplished this, we did this, we have made a difference in these kids' lives. And that's you know, that we, that community feeling, is a really special thing. Uh it is um, I I think it's the I I will get it, I will butcher it, but it's the Margaret Mead quote never doubt what a small group of concerned citizens can do to change the world. Indeed, it's the only thing that ever has. And that is very much kind of the spirit of the CF community is we can do this, we have done this, uh, we have a track record of doing this, we will finish this job. Um, and it's it's a fun thing to be a part of. There's an energy to it. It makes you, it fills you, it fills you up.

SPEAKER_01 36:43

I I it is definitely an energy of family and togetherness, and I I think that is you know definitely something that's beautiful. Um, but it's also a struggle in the CF community. Um, you know, I I know Brianna uh in you know a few years before she passed, we we we kind of went through a struggle where uh no longer were CF patients allowed uh to be at gallas. Um it's tough to take on as a patient because you've you felt what it was before, but you also understand, you know, kind of the challenge of you know what that is with somebody with such a compromised immune system possibly affecting others, and then now with COVID, um how has all those changes to elaborate on what what Nick, what you were talking about, is it's it's something called infection protection and control.

SPEAKER_03 37:40

So what was found, uh this goes back a little before my time, I'd say six, seven years ago, I guess it was.

SPEAKER_02 37:45

Yep.

SPEAKER_03 37:46

Um the foundation kind of changed the rules for its events so that only one person with CF could attend. And you may say, well, that seems crazy. Why is that? Well, what had been discovered is that the infections that are carried in the lungs of people with CF, other people with CF are uniquely susceptible to. So while you and I uh are not susceptible to these things, these bugs, these infections, are highly contagious to people with CF and they're airborne. Um and um so this idea of social distancing that we are now all familiar with is something that people with CF have been familiar with for far longer. And um, you know, I it is very hard to think about anything positive coming from something like this pandemic, and given the pain that it has inflicted on so many. And yet I think within our community it has created a greater understanding of that feeling of isolation that people with CF have to deal with all the time. And I think for us, you know, I don't think we'll, I think we are gonna find ways. Look, we're still gonna we have to have the discipline around infection control. I mean, I just to put some perspective on this, many, many years ago they used to have CF camps for kids, and they were always wondering why in the fall so many of these kids were passing away. You know, so it was real, it's not made-up science. Um, but what we've come to realize is that we can connect virtually and we have an obligation going forward to be more inclusive. We know that we can't do it in person, but we can find better ways of bringing people in and making them at least feel partially a part of something, right? Um, so much of what we do is based on being together as a community. We are unlike we a lot of charities for a lot of good reasons have moved away from event-based fundraising. Um, you know, it's it is far better for an organization to just get a check than it is to host an event. Hosting an event costs money, it's not as efficient. But for us, we're always going to stay event-heavy because that's how we built this community. And um while we will not incorporate more than one, that's why our outdoor events like Great Strides were so much more popular because because they were outdoors and you could maintain social distance, we could have more than one person with CF. And the best thing about a Great Strides walk, which is kind of our biggest event, uh, it's national, there's hundreds of them, is that you see the people in their purple shirts and you know they're fighting CF. And some of them could be a year old and some of them could be 25 years old. Um, and every once in a while you come across the 60-year-old with CF, which is always a really special thing to come across, right? And um, but I think the pandemic will actually make us better. On the other side of this, as a foundation, we have all gotten a little bit more familiar with what people with CF have have had to experience, and um I think it will be better for it at the end.

SPEAKER_01 40:41

I I definitely have noticed um a lot of these uh ways that we can advance um and and uh be able to reach a wider audience um has been sitting in front of us kind of, but we haven't been challenged to have to think about it. Um and so to see some of these things, you know, like I I saw a uh a convention that was happening the other day that had over 300,000 people at it, but it was all virtual. And so now all of a sudden, you know, you're able to have these events but have more people there. Um have you seen that type of increase of actually it you know advancing just by you know a little bit of redirection of thinking?

SPEAKER_03 41:26

Well, we've well uh very specifically within our community, we have definitely found that we have found ways to connect more with the adult CF community than we ever have before. And it's noticeable and it's tangible and it's visible and we see it. So, you know, to your point, you know, uh when you're limited to one person per event, you tend to not even connect with the other people in that local community that have CF. And now, because of these events, um, the other thing that's happening is there's a groundswell among the adult with CF community to create a community for themselves virtually. Um and last year, a few leaders of the adult community approached me that I I know them, and they approached me and they said, we want to do a fundraising event that is by people for CF, for people with CF. And it was called Rose Up. And you I think you probably know about roses, 65 roses. Um and it was we pulled it together super fast, but it was it was a remarkable, they were able to get people with CF in all 50 states to participate. Wow. And they put little roses in every state as they filled their board, right? And a lot of these people had never been connected with the CF Foundation before. And they found each other through social media and through other mechanisms, right? And they drew people in. Um, and we think for us, that's again, you know, you try to make some lemonade out of the lemons of the pandemic. I think this is an example of definitely finding connection with a greater proportion of our adult community is definitely making some lemonade out of those lemons.

SPEAKER_01 42:58

That's um it's exciting to see the progress. It's uh sometimes being able to stand outside of the struggle and see how sometimes it was right in front of you and how advancing it is, um, is is sometimes you know, uh a little bit of a chuckle, but it it is exciting to see you know the those steps of growth. Um and yeah, well, it's interesting.

SPEAKER_03 43:24

Some of it is, you know, I I think the acceleration in technology to enable it has made a difference too. I mean, yeah. I I hadn't, you know, if you went back three years, had you ever been on a Zoom call? You know, and now you know uh it's pretty commonplace to get on Zoom calls, right? So I think technology has helped us. There was a a nice coincidence of there being technology to make it happen, yeah, um, and social networks to to expand the reach.

SPEAKER_01 43:51

So I I have to ask um, you know, kind of to to start wrapping this up. Um in your full experience. of this and I know we've kind of touched it a bit but what would you say is like the biggest thing that you you take home every day um you know from this like what kind of lessons would you say that you've been able to apply elsewhere or been able to take and share with others to um yeah I'll bring it back to that little expression over your left hand shoulder there choose your attitude a little bit.

SPEAKER_03 44:29

You know I think I I'm amazed by people with CF and their families. I am uh incredibly fortunate to have uh two healthy children um they're not they're not that young anymore I guess I guess one of them technically isn't a child and the other one is barely a child but it you know when I hear the stories of perseverance and and the and and I meet these people with CF and they're always smiling and their families are always smiling and they're happy and they and yet they're spending three hours a day going through treatment and never knowing when the next trip to the hospital for an exacerbation is it can't help but make you reflect upon um the the fortune that you have to to to to to to be here and to get to experience all that life has to offer. So I I think for me personally I am a you know and and it's you know it was part of the reason I joined was I I think I have a much greater appreciation for the things in my life than I ever did before and a much greater desire to help um provide those things for others than I ever did before. And I think you know that's on a on a personal level from a from a you know from a work perspective however what I focus on every day is boy do we still have work to do. It is still unacceptable to me that people are dying young. It is still unacceptable to me that people are spending three hours a day going through these treatments. So from a work perspective my lesson is boy do we have work to do. Our most challenging and important work is ahead of us not behind us. And while it's wonderful to celebrate all that we've accomplished and that is important and you need that celebration to move forward we have work to do. So I I say those words we have work to do a lot.

SPEAKER_01 46:21

No I I I mean I couldn't agree more and it it kind of transitions into you know my next question that I I ask a lot of people but you know that is definitely one of the biggest lessons that I learned from Brianna and her family in the fight of uh you know cystic fibrosis um you know I I I kind of explain it as an hourglass you know here here's this family that is told how much sand is on the top of your life of that hourglass as you're told that you know at three years old that you know a life expectancy of 13 at the time now it's you know a little bit further but you know that challenge is tough and so you're challenged to now every single day you have to live like tomorrow's not going to be here uh where you know some do not have that have ever been told that so that hourglass of how much sand is on the top is not as uh visual so that is definitely a huge lesson that I learned from Brianna um and her family of you know the the quality you know of of taking every single day like it's your last and you know uh uh fulfilling it in in so many different ways um you know the same lesson is huge um and and with that Brianna you know in her in her wisdom um as her way to help others um things that I'm learning that you know make me kind of cringe because they're lessons I learn you know now from her going wait a minute you knew this then um one of those was this this quote you know choose your attitude create your life um you know she when my mom passed she saw this kind of quick uh uh passing and and almost a fight uh because we hadn't talked about death we hadn't talked about these things and then with Brianna you know we've had these strong conversations and uh for her to create this and now this legacy to kind of you know continue um I gotta ask you if if you were to interpret that and you kind of did a little bit but choose your attitude create your life how would you kind of interpret it in your words you know I think um you you have a choice when you wake up every day and um I fundamentally believe that your attitude going into the day will shape your day and you can have a better day if you fundamentally believe that you're gonna have a better day.

SPEAKER_03 48:49

And that doesn't mean that you don't have good days and bad days. That's that's not I'm not that naive but I do believe that your outlook and the approach that you take to any given challenge in your life or any given opportunity in your life put it put differently makes a fundamental difference in how it's addressed. And I wear around a shirt all the time that says half full on it. Especially when my kids are driving me crazy I wear around a shirt that says half full. Because I think fundamentally you can look at a glass as half empty or half full it all depends on how you want to perceive it and how you want to drive it forward. So when I see when I you know when you first told me about choose your attitude and I saw choose your attitude create create your life I just think it is a perfect way of expressing this idea that how you approach things makes a difference. It's not just about the fact that you may have a a hill to climb it's a it's about the fact that you you know what yeah I've got a hill to climb and I might not feel that great when I get to the top of it but boy the view up there is going to be freaking awesome and I want to go see the view. So that's the attitude I'm gonna have is I want to see the I want to see the view so yeah I'll put up with the struggle in the meantime and um it doesn't make the struggle go away but but when you're working towards something and life is something worth working towards um I think your attitude fundamentally does make a difference.

SPEAKER_01 50:08

That's beautiful I mean you you're right um whether whether you whether you have to make a choice or it's something less um you know some of us like with CF you know they they have to make a choice um to do that um where others are you know have a little bit more uh of of freedom I guess is the word um but no it's it's definitely um as I say it's easy to say but difficult to do um but it's definitely something that you know I again I constantly learn from Brianna um if people want to get involved um and they want to get connected um what are some ways that they can uh reach out and um yeah I so you know I I guess first of all we have uh you know we have chapters just about everywhere not everywhere but just about everywhere we have 70 chapters around the country local chapters we will get back to being in person at some point this pandemic will end um you know up until then I I would encourage we have a really simple website it's you know cf.org so cf.org and it is a great website soon to be greater we're upgrading it um but I think it it's a great place to to learn about the disease to learn about the history of the foundation to see how you can get involved and we have a lot of opportunities to get involved obviously donating is one way but attending I would encourage people particularly as we get back to being in person go to a walk just feel feel the sense of community that comes when you show up there get a sense for what it is we have um you know I'm gonna you know we have uh a group called Tomorrow's leaders which I would encourage young professionals in particular to think about it's a national we have it locally and nationally and what we do there is we provide opportunities networking and educational opportunities for young professionals and try to uh obviously we're trying to connect people to our mission and create a a longstanding relationship with people over the course of their careers but I would encourage people to look into tomorrow's leaders on our website that's something that you can join and again that's for that's for I'm I'm one of yesterday's leaders so I'm tomorrow's leader that's for sure but you know I would encourage people to think about something like that we have at we do a lot of advocacy advocating for healthcare policy that makes a difference in the lives of people with CF and as you can imagine it's not just people with CF that benefit from that advocacy.

SPEAKER_03 52:42

So you know there are lots of different ways to to be involved. We are always looking for time. It is not just about money with us it is about being a part of a community. If you want to be a part of a community that is making a difference in the world and making a difference more tangibly in the lives of individuals living with a disease I would encourage you to do that. And I think I would say start you know we're starting to have some outdoor events now and I think by the time the fall rolls around I suspect we'll start moving back indoors soon enough.

SPEAKER_01 53:12

I love it. I I will have to say too that it is one thing about the organization that I love is the education of the actual disease all the way up to you know being involved is very clear and very um most people when you talk about a disease there's there's weight there's there's heaviness um but it is definitely something in the CF community that as you've said before is there's a bit of ownership and a smile um you know as as everybody's going through it. It is challenging you know as you said you know we we want everybody to be healthy but um it it definitely puts a smile for the struggle that's there um giving people uh you know that that energy or that that lift up um so that way in the morning they can they can have that hope and that that half full mentality nobody nobody fights this alone yes nobody fights CF alone there are thousands of people fighting with you every single day so nobody fights alone in this fight. I I think it's beautiful I um I do want to say too you know one thing that you know when when this whole organization uh or or when choose your attitude um I I started writing the book after um you know I I left side of my face went paralyzed in 2019 and I I thought it was a stroke but it was Bill palsy and it was this wake up call to write the book and as I was writing the book I realized the power of the quote um and what was exciting is is as I I shared this mission um to see Brianna's quote kind of reach a wider audience and to be able to help naturally you know everybody through life um but as a way to give back and as a way to channel one thing I've decided um and and I'm excited to kind of share with you is we're gonna give a percentage of our sales to the Cystic Fibrosis Foundation and continuously try through our organization help others uh through the life struggle but at the same time be able to give back to the CF Foundation to help Brianna and others' goals to hopefully one day get that CF to to stand for Cure Found.

SPEAKER_03 55:27

That would be wonderful and thank you and your your organization and you have the ability to make a difference not just for people with CF but uh you know you're doing good work and I I wish you all the best obviously as you move it forward and thank you that's overly generous of you.

SPEAKER_01 55:42

Well I appreciate it it's um you know Brianna that was one of Brianna's biggest efforts and um it's you know my way to learn continuously learn from her but also well you need to you need to go look at a purple shirt at your next great strides walk and realize you've paid it forward for that kid. Yes exactly um so exactly it's it's it's definitely heartwarming um to to see that and to continue um but um I won't take any more of your time I appreciate you having you on it's been great um I think a lot of people have gotten a lot of good stuff from this um thank you for for your time thank you it was my pleasure I really enjoyed it Nick thanks and that's this episode of the Choose Your Attitude podcast thank you again for watching for listening as always leave those reviews go subscribe help share us with the world thank you so much for being a part of this one do me a favor go be a part of that CF Foundation you can go find them at cf.org we'll put information in the description of both the YouTube channel and the podcast channel we love what they are doing and as you know Brianna had cystic fibrosis and it was one of her biggest dreams as many as well as many others is to make CF stand for cure found and to be a part of that journey and to continue that on Brianna's legacy choose your attitude in this brand we are excited to be able to pledge a percentage of all sales to the CF Foundation so not only are we helping so many lift up their lives but at the same time we're pushing to be able to help make CF stand for Cure Found. So when you buy anything or help support Choose Your Attitude you're also helping the CF Foundation if you want to support the foundation directly go to the CF.org.

SPEAKER_00 57:38

If you want to buy some Choose Your Attitude uh apparel and accessories uh come on over to chooseyattitude.com we'll give you 20% off using the code podcast20 again that's podcast20 that's 20% off go to choose your attitude get the men's and women's premium encouragement apparel and accessories proceeds percentage of that goes to the CF Foundation and we couldn't be more excited and thank you for listening I couldn't be more excited for what's ahead so much more coming on again I'm your host Nicholas Strand I appreciate you see ya thank you for listening to reach out to Nick and the Choose Your Attitude community find us on social media at Choose Attitude Create Life share your attitude with the world with merch guaranteed to encourage at chooseyattitude.com be sure to share us with friends family and colleagues and while you're at it leave us an uplifting review we'd very much appreciate it check back for new episodes until next time choose your attitude create your life