Michael Schulder:  [00:00:00] I’m journalist Michael Schulder, and on this episode of Wavemaker Conversations: A Podcast For The Insanely Curious…

Carey Kauffman:  My name is Carey Kauffman.

Michael Schulder:  Sometimes I have big names on this show. You are not a big name.

Carey Kauffman:  I may not have a big name, but I’m a big girl, being 6’2”. That would make me large in those circumstances.

Michael Schulder:  As we approach the peak of march madness –Carey Kauffman, a veteran of Duke University’s Blue Devils basketball team, shares her personal story of a woman who was basically born into basketball at a time when girls were not really expected to play the sport.

Carey Kauffman:  I grew up one of four daughters – the second of four – to a three-time NBA All-Star 6’8” center, which probably would be short by today’s standards.

Michael Schulder:  Do you remember a few things he might've said to you that stuck? 

Carey Kauffman:  Oh, I do. “Suck it up, sissy” would be one. [laughs]

Michael Schulder:  What Carey Kauffman learned on the court – from her days as the only girl in an all-boy’s league [00:01:00] through four years on Duke’s starting lineup -- she now applies to her work with children and adults suffering from chronic and rare diseases. The mission chose her.

Carey Kauffman:  I’ll tell you – nothing like having two out of your four children have supposedly completely distinct rare diseases to make you realize, “Huh, maybe someone’s telling me something. Maybe this is where I’m supposed to be.”

Michael Schulder:  How can the lessons of basketball inform our approach chronic and rare diseases? That is the higher purpose of this march madness special.

Carey Kauffman, welcome to Wavemaker Conversations: A Podcast For The Insanely Curious.

Carey Kauffman:  Thank you, Michael. I’m excited to be here today. I’m looking forward to speaking with you.

Michael Schulder:  Give us your self-introduction.

Carey Kauffman:  I have had many roles in life, from an NCAA women’s basketball player, professional basketball player, rare disease advocate, and I have a real passion for helping people that are living with chronic and rare diseases [00:02:00] leverage their abilities that they have to overcome.

Michael Schulder:  Clearly, to our audience, we’re going to be covering a lot of ground today because the initial prompting for this was we’re in the middle of March Madness right now, but I’ve wanted to interview Carey for a long time because of her work as a rare disease advocate, and her personal experience with that. But we’re going to start with basketball, You played. You were on the Duke starting lineup for what, five years?

 Carey Kauffman: Four years. I actually made the four year plan. I graduated in four. [laughs] 

 And it was the early ‘90s, was it ‘92 to ’95, am I right?

Carey Kauffman:  ‘91 to ’95, you’re right.

Michael Schulder:  ’91 to ’95. And in fact, I was looking back at your history a little bit, and here's something: when you guys at Duke were playing, I think it was North Carolina, and the North Carolina college newspaper said- mentioned, Carey Kauffman could be “hazardous to the Tar Heels’ health.” 

Carey Kauffman:  Ooh, I like the way that sounds. “Hazardous [00:03:00] to the Tar Heels’ health.” That’s great. That’s the only thing you can say as a Duke graduate, that you might be hazardous to their health. So, that’s good. I’ll take that.

Michael Schulder:  So you’re 6’2”, which – now, that’s not really considered major height anymore in women’s basketball, is it?

Carey Kauffman:  Well, it’s considered tall. What was different about my height at the time that I think has now become more commonplace is I was a swing guard forward. I played a three. At the time, there was only one other player – on Virginia, University of Virginia – that was actually a 6’2”/6’3” guard forward, but looking at the women’s game now, you see even 6’5” girls stepping out and hitting a three. I think the size has been a – women are taller now. I think women – now, 6’2” is no longer – to your point – exceptional. You’ve got women of all sizes, including 6’9”. It’s unbelievable to see the kind of height, you know, that we’re seeing these days.

Michael Schulder:  So, in those days, you said you played guard forward?

Carey Kauffman:  Yes.

Michael Schulder:   [00:04:00] Typically, the 6’2” woman in college basketball in your day – in the early ‘90s – was playing what?

Carey Kauffman:  Was playing inside. Was a center – mainly a center or a forward that stayed inside, more or less. When I first started playing basketball, I was a point guard. I was supposed to be short, and then I grew, and I decided I didn’t want to be an inside waiting for the ball. I wanted to have the ball and decide what to do with it. So, that was my personality.

Michael Schulder:  Remember that line “I wanted to have the ball and decide what to do with it.” I think that's a clue to why, as you'll soon discover, Carrie Kaufman's drive and resilience can feel so contagious. You'll especially notice it when our discussion turns to the subject of taking on chronic and rare diseases, which are more relevant to all of us than you might imagine. Okay, let's continue with this Wavemaker Conversation: A Podcast For The Insanely Curious. 

Is it a much higher level game today, or is it basically the same with a few improvements at the edges, or maybe not [00:05:00] improvements? You tell me, when you’re watching March Madness, what’s your take in terms of, “Oh, if I were in there today, playing the way I was back then, here’s what I could do or couldn’t do”?

Carey Kauffman:  That’s interesting. It’s exciting to think about. I think that overall, what I can say, outside in, and having played – my goodness – over 20-some-odd years ago is that the game has accelerated on all levels. I think that you see the speed of the game. You see the size of the game – the size and the speed together, because a lot of times, the bigger girls weren’t as quick at the time, and I think now, you see even the big girls as fast as some of the guards. Not to say you wouldn’t have had that 20-something years ago, because you certainly did, but I think what you see is an upgrade across the board, across all five players versus you may have some great talent in pockets across the board. You almost have a next-step level of the game improvement, I think, because of that [00:06:00] acceleration. Honestly, I think we can attribute it to several factors. I think that Title IX really made a tremendous impact on the growth in equity and parity in the game, which we can get back to with the UConn as a whole other animal – we’ll speak to, I’m sure – but I think that we have a whole generation of women now that had mothers out there that have played. We also have access to improved training insights and coaches. The women’s game is no longer, in my opinion, getting what I would say – not to say that there weren’t great coaches 20 years ago, but across the board, we’re not getting the “B” coaches. 

 Michael Schulder: You were telling me a story you have to share with people because you grew up as a kid – a little girl – wanting to play basketball. It was a different time. Tell me about the first time your dad – and then, tell me who your dad was – the first time you were taken to join a basketball league.

 Sure. I grew up one of four daughters – the [00:07:00] second of four – to a three-time NBA All-Star. 6’8” center, which probably would be short by today’s standards – Bob Kauffman. He played years ago. He was played – I would say what used to be the Buffalo Braves. When he was first out of college, he was the third pick in the first round for the NBA draft to the Seattle Supersonics, and then he played for Chicago, which is where my older sister Laura was born, and then I was born in Buffalo with the Buffalo Braves when he had his best years, I would say, as a player. I was born there, and then he was traded to the Hawks for the remainder of his years, where my other two sisters – Joanna and Kate – were born there. Growing up the daughter of a man who had that kind of athletic talent, we grew up to just giving everything you have. You give it your best no matter what you do, especially when it came to basketball. 

 Michael Schulder: By the way – [00:08:00] let me interrupt you. Did you get that because he would talk about it, or you just watched his example?

 I think it’s a combination. I think that when you talk to different athletes, or you talk about why people play sports and why they don’t, I don’t think you can teach competitive spirit necessarily. That’s my belief. I think that it’s hard to ignite that in someone. You can ignite a fire on some level, but you have to love competition to really put in the time and the effort to take it to the next level. The question always was how do you – for me, I was competitive in everything. I was kind of that pain in the tail, and early on, I had to learn to channel that competitive nature. But there was a lot of reinforcement of that desire, if that makes sense. So, as a parent, when you see something in your child, potentially, that you approve or want to fuel the fire, you give that positive reinforcement, and there [00:09:00] was  always a lot of positive reinforcement about being competitive and wanting to be better, and having that drive.

Michael Schulder:  Do you remember, do you remember a few things he might've said to you that stuck?

Carey Kauffman:  Oh, I do. “Suck it up, sissy” would be one. It was a joke. He would just make those – he would call his girls – poor guy, he got stuck with four girls. We joked about that he never had a son, so he called us “rough, tough cream puffs” at the time. Ironically, one of my first memories of my dad, which I think would not – you have to think about the timing of this statement; I don’t necessarily agree with it with where we’ve come – but I was very young, probably three or four years old, and the first time I remember throwing a ball, I threw it to my dad. He threw it back and hit me really hard in the chest. I remember being – “Ugh,” you know? He looked at me, pointed his finger in my face, and said, “Never throw the ball like a girl.” That stuck with me, and I remember thinking, “Huh…” Today, we would say, “I’m proud of throwing the ball like a girl,” but at the time, it wasn’t something – [00:10:00] if you threw like a girl, it was something that was not a proper technique. It was not an athletic throw.  If you were athletic, you were considered a tomboy, not an athletic woman or girl. So – I’m sorry, I digress.

Michael Schulder:  No, every digression is welcome on Wavemaker Conversations: A Podcast For The Insanely Curious. But let me bring you back, then, to that first trip – the first trip to the basketball court to join a league. You were how old?

Carey Kauffman:  I was in third grade, and I was very excited to go play, and we went up to the local sign-up – wherever it was – a little school, and they were going to have a league. And, I walked up there, and my dad said, “My daughter would like to sign up for the league.” They said, “Well, I’m sorry, we don’t have a girls’ league. It’s just a boys’ league.” He said, “Where’s the girls’ league?” They said, “There’s not one.” He said, “My daughter wants to play,” and they said, “Okay, well, you’re going to have to coach because they probably won’t pick up a girl on their team.” So, my [00:11:00] dad  coached, and we had a really rough year. We learned a ton. We were the “cootie” team because I was the only girl in the whole league. Those poor boys on my team had to endure a little bit of – I guess they had the benefit of being coached by an NBA All-Star, which was really super-cool, but they also had to stick with me because I was the girl on the team. But we learned a ton that year, and my dad was tremendously – he believed tremendously in building a strong foundation of the fundamental skills. He was like, “Wins will come if you can build a strong foundation.” So, that was his belief system. 

Michael Schulder:  How did your father – who played at such a level – what did he teach you and your fellow third-graders? Do you remember? 

Carey Kauffman:  I do. Honestly, he broke the game down to the most very basic level in terms of dribbling, just standing with your dribble – right hand, left hand, repetition, over and over again, staying close to the [00:12:00] basket so you get your form correct. At that time, they weren’t actually lowering the hoops. Now, you have a lot of places you go where they lower the hoops to accommodate the size of the kids. They didn’t really do that at that time. So, my dad was like, “Don’t worry about getting it all the way to the rim if you can’t. I’d rather have you have good form and practice good habits because practice becomes muscle memory, and muscle memory is what helps you the game, and it’s only that understanding of proper form” – which, by the way I didn’t always have, I have to say. I had to do it my own way. It was my own way of rebelling, thinking, “I can do it this way,” but I always have that memory of having the importance of proper form, and perfect practice makes perfect.

Michael Schulder:  You're listening to Wavemaker Conversations: A Podcast For The Insanely Curious. I'm journalist Michael Schulder. My guest, as we approach the peak of March Madness is former Duke basketball player Carey Kaufman, through her  [00:13:00] company called WellSelf360, she develops wellness programs for companies. And as a result of her own experience, as a mother of two children born with rare diseases, she is on a mission to leverage their abilities, as she puts it, and to help these individuals in their caregiving circles get the most out of life. And as you'll soon discover, her insights, many of which were learned on the basketball court, provide actionable intelligence, not only for those battling chronic and rare disorders. And as you'll also discover, humor is a key ingredient. 

So, tell me – because here we are in the middle of March Madness, and that’s the purported excuse for me bringing you on here. So, tell me – we’re looking at this, and I remember I spoke to you when we saw the brackets, and you said, “Oh, no. Duke – my team is in UConn”

Carey Kauffman:  Uconn’s bracket! [laughs] 

Michael Schulder The assumption probably was at some point, we’re not going to be able to beat UConn, or [00:14:00] maybe not,  and now, we’re sitting here – just from the audience’s perspective –

So, here we are this morning, the day after your No. 2 seed at Duke lost to No. 10 seed at Oregon. So, you just never know who can beat you on a given day, except we’ve got this dominant force, University of Connecticut, 107-game winning streak. It can’t last forever. When you played for Duke can you remember a time that you played against a team that was – because you didn’t have the winning streak there. You had a good team. Some years were better than others. But do you remember preparing for a game against the team that was supposed to demolish you? How did you get into the frame of mind, and did that frame of mind ever work in terms of allowing you to upset another team in a big way? 

 Absolutely. I hate to  admit [00:15:00] this, but my senior year, it was UNC. They were at the top of the ACC. We were, too, but they had an incredible winning streak. I wouldn’t say they were supposed to demolish us, because when it comes – we were also a strong team, but they certainly were favored to win. It’s always – no matter how poorly or how well Duke and UNC are playing, it always ends up being a good game. The stakes are higher, too, to win those games. So, in terms of getting mentally prepared for those kinds of games, first and foremost, you have to believe in yourself. You have to believe that you have been – in the preparation and the time. We’ll talk a little more about this, but I believe that really studying your opponent, knowing your opponent, knowing how they operate, what their strengths and weaknesses are, how can I diminish their strengths and  [00:16:00] heighten their weaknesses to understand how I can beat them? So, confidence in yourself, understanding what you need to do to leverage your strengths to beat them is really key.

Actually, we rely on the coaches to go through a ton of the film, and what they do is bring you in to look at specific excerpts about what that might apply to you, and there’s typically – at least in my day; it’s probably digital now – they would draw up a scouting report, and you would study the scouting report based on the people that you would be guarding, and we would all discuss this player – this is what he or she does. In my case, it would be a “she,” right? Or, this player – watch out, because this is where she’s strong. “Carey, you’ve got to get on the boards because if we have this situation, we really need to do that.” So, it really is directive in terms of how you’re going to engage in the game – not to say that you’re not going to just play, but understanding their plays, first of all – what are their out-of-bounds plays? [00:17:00] Do they run the  running game, or when do they do that? Who are the people who they’re going to go to in the last minute to shoot the ball? You typically know who they are, but a lot of times, you discuss what are the best ways to counteract what they’re going to do.

Michael Schulder:  By the way, so much information in your head – and this is an important thing for high school and college students to hear right now – because so much information that you just have to have in your head to recall…really, almost in your muscle memory. You can’t be thinking too much on the court.

Carey Kauffman:  You can overthink it. 

Michael Schulder:  And yet, you’re not just an athlete. You’re a student-athlete, and you’ve got so much on the academic side on your plate. How do you compartmentalize it? How does the game, and the film, and everything you’re talking about in that locker room not seep through into every moment of your life?

Carey Kauffman:  That’s an interesting question. I think that you learn, over the years, to focus. You have to.  [00:18:00] When I was in my studies, I was very much in my studies – not to say that you don’t get distracted. For sure, that does happen. Or, you’re tired because you had to get up at 5:30 and practice that morning; you’ve got something else that night for the game. But you do learn that over time, and that’s a very important skillset for anyone who’s multitasking, whether in the business world, or on the court, or at school. For me, though, it was – it’s kind of putting your game face on no matter where you are. When it’s game time, it’s game time, and for me, there was nothing else like game time. You do rely on that ability to leverage the information you need in that moment. When I was face-to-face with one of those players, I wasn’t thinking about the scouting report. I was just thinking about beating her to the basket. So, whatever it took – and there were times when that scouting report would actually be there and it would be helpful, and there were times when I just had to shut it down and be like, “I’ve got to have [00:19:00] confidence in myself to figure this out.”

Michael Schulder:  So, I need one more basketball story from you, and then we’re going to transition into our other subject, which is rare diseases, and how the two connect in some way.  You were in a quadruple-overtime game, and I am going to try to post the picture on my site, Wavemaker.me, because I saw it online, and this is you – it might have been in the fourth overtime; I’m not sure, you can tell me – but it was that four-overtime game against Alabama, was it? 

Carey Kauffman:  Alabama, yes.

Michael Schulder:  You had that game face on. When I saw that – that face would have made me back up a couple of feet.  So, tell me about that game, and what you learned about life in that game, because you really did learn something.

Carey Kauffman:  Absolutely, I did. It was 121-120, and four overtimes, like you said, and there were, I believe, 11 NCAA records broken that game.

Michael Schulder:  By the way, this was during March Madness. It was in the tournament, and it was which round?

Carey Kauffman:  It was the second round, and we actually ironically [00:20:00] would have been playing UConn that next round, and Rebecca Lobo was my year, so I missed my big opportunity to rub elbows and throw elbows with her. They went on to win it. But in terms of what you learn – and I think this is honestly an interesting transition in terms of what we’re going to be speaking about, because one would say, “My goodness, how does this have anything to do with life in general, and especially with rare disease?” In terms of life, I think so many sports – and from my own experience, basketball – it really is a tremendous opportunity to learn a lot about yourself and how you engage with your environment. For four overtimes, it’s one thing to know that you’re going to be playing a game, but when you have something that requires so much mental effort and physical effort, it is incredibly tiring, and you have to know that every [00:21:00] expenditure of energy is working towards that goal that you’ve wanted to do. You want to win, ultimately. But I think what you learn in that situation in particular is how much your team matters. Your team is everything. Now, you have your own role, and you can only control what you can do, but having a team around you to give you a high-five, to keep that momentum going, to pick you up when you fall on your behind and you might be frustrated, and get you out of your own head and say, “You know what? Forget that. Let’s move on. We made a mistake.” If you dwell on your mistakes, like my dad always said, you’re going to make another one. So, if we sit there and wallow in the moment, you’ve got to refocus, shift your attention, and get back in the game – put that game face back on. I think that’s an interesting metaphor for life in terms of you’ve got to get back up when you fall down. You’ve got to build that resilience, build that – rely on that internal – if you don’t have the self-efficacy or confidence, you’ve got to work [00:22:00] on building that, right? You can’t be successful at that level if you don’t have confidence in yourself. Even after you’ve missed four or five shots, you’ve just got to take another shot. If it’s your shot, you take it. If your shot’s not going in, you can always play good defense. You can always rebound. You can always get back on defense. You can always play strong. Always give that effort, because at the end of the day – in life and on the court – you want to know when you leave the court, when you leave this life, that you’ve put it all out there. I think that’s something that I’ve learned in my own life – not that you say you follow it every single day, but those are good reminders for me in terms of I want to know that I’ve left it all on the court.

Michael Schulder:  Well, that is a perfect transition to what we’re going to talk about now because as much as you were challenged in competitive sports, it doesn’t even compare to the challenges you’ve had to experience after sports.

You're listening to Wavemaker Conversations: A Podcast For The  [00:23:00] Insanely Curious. I'm journalist Michael Schulder. My guest, during the heart of college basketball’s march madness, is Atlanta’s own 6-foot-2 Carey Kauffman – who was a starter on the duke women’s basketball team in the early 90s – played pro ball in Europe for a while -- and has taken the strength, and resilience, and teamwork she learned as a basketball player – and – through her company WellSelf 360 -- translated it into helping her own family and many others handle the challenge of living the fullest life possible when your opponent is a rare disease.

Carey Kauffman:  Well, just a little bit of context – rare diseases are diseases where there’s less than 200,000 people in America that have them. So, for example, some people are surprised to hear that cystic fibrosis is actually a rare disease. About 35,000 people have it. So, that qualifies under the 200,000-person qualification for a [00:24:00] rare disease. There are 7000 rare diseases, which actually translates to 1 in 10 Americans, and when we think about the rareness, if you will, of each individual disease, as a group, it’s actually 1 in 10 Americans, which is so interesting because in terms of where I am, I just had no idea about that context. In terms of how I got involved, myself, I basically had a son who had a rare disease similar to cystic fibrosis called primary ciliary dyskinesia. He was born a full-term, healthy baby boy in a very fantastic hospital here in Atlanta, and he had a little bit of congestion. They thought, “Oh, no big deal. We’ll just take him back and take a look at him.” This is 24 hours after he was born. They did an X-ray because it’s customary to do that when you go into the NICU – the [00:25:00] neonatal intensive care unit – and they found out that he had reversed organs, which was obviously – it sounded like sci-fi to me. You think, “Wow, how could that happen?” They said, “We’ll just make sure his heart’s okay, and if that’s the case, we’re good, at least for now. “But there’s a chance that he might have this underlying condition called PCD. Don’t worry about it; it’s just a snotty nose. The only thing you’ll have to work about is that he’ll have a snottier nose than other kids, but it’s not life-threatening or anything.” This is what I was told in the hospital. But you kind of know something’s not right when you’ve just given birth to this strapping nine-point – at least in my family, he was actually small by our standards. He was 9 pounds, 4 ounces – small in my family, hard to believe with four girls. But after that, long story short, he ended up passing away two days later, and they just could not believe it had happened. They had never seen such a strong, healthy boy [00:26:00] just go so fast, and they’d never seen anything like it. When they asked me about whether or not I wanted an autopsy, I said, “I really want you to test him for this underlying disease.” They said, “Well, that wouldn’t be seen as a cause of death.” I said, “Well, I believe that’s what he had.” While he was in the NICU, we’re looking on our – at the time – BlackBerrys, and learning this is actually more like CF. They don’t really know what they’re dealing with.

Michael Schulder:  More like cystic fibrosis?

Carey Kauffman:  Yes, it was more like CF, because with rare diseases, there’s not a lot of information out there. I certainly don’t blame the doctors. We were in the wrong time, and I really believe that. He was diagnosed post-mortem with the disease. He’s the first baby – honestly, first child in the world – of being diagnosed post-mortem with this disease, but we can’t track what we don’t measure, and because they weren’t seeing that as something that could have contributed to his death, they weren’t seeing it as [00:27:00] potentially a statistic, if that makes sense. So, after that, I realized – I know when I was in the hospital thinking, “He has this disease; what can I do?” I honestly went back to my being raised as an athlete and said, “I believe there are things – I can leverage my own experience.” I can’t cure it; I’m not a researcher; I’m not a clinician, I can’t treat it, but I can darn well make sure that my son gets the most out of what he has. That has stuck with me ever since that day, eight years ago.

Michael Schulder:  So then, what was your – so, your next step was obviously to push for the autopsy, and you found – what was the name of the disease again?

Carey Kauffman:  It’s called primary ciliary dyskinesia – PCD.

Michael Schulder:  So, tell me exactly what it is, and how many people – based on our knowledge today – have PCD.

Carey Kauffman:  Sure. Basically, PCD is one of many diseases that are caused by dysfunction in the cilia that you referred to – the hair-like structures that are in your lungs, and your sinuses, ears, and in parts of your brain. [00:28:00] They basically are important because they move like hair, and the flow of them gets rid of bacteria and gets rid of potential infections. It protects your body from infection. So, when your cilia aren’t working, a lot of our community people with PCD would have severe sinus issues, severe – trying to get rid of infection in the lungs. So, you have a lot of – over time – degeneration of the lung tissue, a lot of scar tissue that you’ve created in the ears. But we’re learning a lot more about the cilia that wave like that – the wave-like motion – but there’s also cilia in every red blood cell of your body. So, two kinds of cilia. They never used to think that there were similarities with the two, but they’re learning there are a lot more crossovers between the two.

Michael Schulder:  Is that strictly because of research being done into PCD, or is it because of PCD and many other rare diseases that might have something in common with PCD?

Carey Kauffman:  Potentially. It’s actually studied because they’re realizing the [00:29:00] cilia are far more intelligent than we ever thought they were. The cilia that I talked about that are actually in the red blood cells are related to oncogenesis, so, related to cancer, tumor formation, speed of formation. It’s also related to several different disease processes – potentially, obesity. So, we’re learning a lot more about cilia. Now, those are the second type. The first type I’m talking about with the hair-like structures are a separate type, but they’re also finally now – in biology and basic science – looking to learn more about the relationship between the two, and their called ciliopathies – these diseases of ciliary dysfunction.

Michael Schulder:  So, was that being – and Connor passed away how many years ago?

Carey Kauffman:  Eight.

Michael Schulder:  Eight. And so, in those eight years, have most of these discoveries and incremental expansion of our knowledge happened in the past eight years, or were they already studying it and they’re starting to put the pieces together a little more?

Carey Kauffman:  It’s a little of both. I think that the [00:30:00] technology for a lot of the genetic testing that we’re doing for a lot of the high-throughput genetic – we’re actually able to break down and discover new mutations faster than we ever were before. When I first became a part of the board of the PCD Foundation, I think there were only nine or ten mutations that they were aware of that caused the PCD. We’re up, now, to the thirties and more, and we’re discovering more every day. Unfortunately, PCD is a highly genetically complex disease. There’s a lot to know, but the fact that this testing has become better, and more available, and cheaper – we’re able to make more discoveries faster. We’ve also been able to launch a clinical and research centers network, which – we didn’t have one eight years ago, and we had a research consortium that we’ve piggybacked, and now, we have 23 around the country and growing. So, it’s really come a long way.

Michael Schulder:  So, two things, because you keep on saying “we,” which gets back to the idea of the team. You [00:31:00] cannot do it on your own, but before we get to that, you were talking about resilience, and again, the idea of bouncing back from that. You don’t bounce back from an experience like that on day one, but you took action on day one, and you thought clearly enough to say, “No, we want to find out precisely what was going on here.” How long did it take you to feel your resilience again?

Carey Kauffman:  That’s a really tough question. I knew that I – I think it was not a… I don’t think it was a conscious decision. I felt like my son was here for a reason, and I had to be resilient to deliver on why he was here. Not to say that it’s all for him, or to save, or for anything like that, but I want to honor his time here, and why he was here, and why I was such a hard-head about finding out what it was that he [00:32:00] had, because if I hadn’t pushed for it, then we never would have known. So, there were two things. One was to honor his time here in this world, and maybe what answers I could help unlock, whether it’s for rare disease – for PCD – or for understanding how people can live well despite and in spite of their illness because I know for me, had he been here, I would have wanted him to have the fullest life possible, and I felt like if I could spend my time helping figure that out, along with helping the PCD Foundation, and the amazing team that they have there, and the founder Michelle Manion get those things off the ground – if I could play a role in that, that would be tremendous. But I felt like there was a bigger picture thing for me in addition to that was how can we take what we learn, and what I would have applied in his life, and how can I transition that to help other people? That, I felt like, was then my mission. The other thing helping me get out of bed every morning after that was Connor [00:33:00] had an older sister, and I couldn’t be a mom that would sit around in bed and not have her a life either. So, having that external motivation – even when you don’t feel like you have it internally – is really critical, and I think that’s what a team helps you do, and to have a meaningful reason to get past things. When things get hard, unless you have a meaningful “why,” it doesn’t matter what you have. You’ve got to have the “why.”

Michael Schulder:  And so, you have now devoted your life to trying to figure out how to empower these patients – not just with PCD, but with a wide variety of these rare diseases.  And so, tell me how that’s working, and also how your family has evolved, because now, you have three children, and one of them is struggling with a rare disorder, is that right?

Carey Kauffman:  Yes.

Michael Schulder:  So…in [00:34:00] some ways, who better to handle this than you? You really have found the strength to try to approach this in a way that empowers both the person suffering from the disorder and the team around them. So, tell me about how that’s evolved.

Carey Kauffman:  Sure, absolutely. I’ll tell you – nothing like having two out of your four children have supposedly completely distinct rare diseases to make you realize, “Huh, maybe someone’s telling me something. Maybe this is where I’m supposed to be.” So, yes, I have another son. I have three children.  Fortunately, my twins that I had – neither one of them had PCD, but one of my children has another condition called Beckwith-Wiedemann Syndrome, which, ironically, in a family of sasquatches, is an overgrowth disorder. So, we wondered if we all had it as a joke. Our way of handling things is a lot through humor in my family. [00:35:00] But it’s an overgrowth disorder, and interestingly enough, in 85 percent of cases, it happens sporadically, meaning it wasn’t something that was passed down from generation to generation like a PCD or a cystic fibrosis.  PCD is autosomal recessive, but what was interesting about that is – and this gets into why rare diseases matter beyond 1 in 10 Americans – we learn a ton about more pervasive diseases by understanding what’s going on in a rare disease. For example, in Beckwith-Wiedemann Syndrome, there’s a lot that we can learn about the whole field of epigenetics, meaning how our DNA expresses itself because it wasn’t genetic in orientation.  It’s more of a… There’s the genetic defect that happens from an external environment, if that makes sense. So, these children with Beckwith-Wiedemann are far more likely – and they don’t understand exactly why – to get rare childhood aggressive cancers early [00:36:00] on. So, by studying why that happens, we can unlock answers to cancers, to broader cancers.  With cilia, for example, if we can understand how to get those cilia that don’t function very well – if we can excite them somehow and get them moving again, chronic obstructive pulmonary disease – the third leading killer in this country – is essentially environmental PCD, because basically, the environment makes the cilia not function, which is why people with COPD have so much of a problem breathing, if that makes sense. So, there actually are connections.  For the insanely curious, there actually are underlying connections to these more pervasive diseases, which is why the interest and understanding of these diseases can be really important. Does that answer your question?

Michael Schulder:  Yeah, it does. And so, one of the things that struck me is – we were speaking recently, and you were talking about how you’re looking to do more than just maximize the impact of the doctor-patient relationship, but that [00:37:00] you’re looking – in a sense, going back to that fourth overtime where I remember you telling me it was you and your team feeling like, “Where are we going to find the energy” –

Carey Kauffman:  Right. 

Michael Schulder:  – “to go back out there?”, which is very much how many of these patients feel. You don’t even want to define your whole identity as a patient to begin with. So, what is it that you’re trying to do now – I’ll call it “professionally” – to improve the day-to-day lives, to help these people who are suffering from these conditions, find more inside themselves to just improve the quality of their lives, and also the caregivers to do the same?

Carey Kauffman:  Yes. There are several things. I think a ton about this. This might be all I think about beyond getting my kids to their sports events, or art, or wherever they’re going. I think about that four-overtime game. When you and I started talking about that, it really made me think more about that specifically. I think first and foremost – again, I come back to [00:38:00] that first thought I ever had starting this process.  When you have that visceral response that keeps coming back, I think it makes a lot of sense, at least to me, and that’s getting the most out of what you have. How do you do that? It certainly isn’t easy, and a lot of times – I have to say this – no matter what you do – you can do all the things right, and when you’re facing a rare disease or a chronic illness of any sort, it doesn’t matter what you put in sometimes.  You can’t always win every battle, and a lot of them are degenerative diseases, so it’s not a matter of “if” – it’s “when.” But how do you maximize the time you have, and what you’re doing? You can have a very full life, despite your diagnosis and your prognosis. What you were saying before is the first way to think about that is a disease is what I have, not who I am.  I think a lot of times, we forget that, because treatment of disease has become so clinical in nature, and I think what – my goal is to [00:39:00] help people understand – not to say that clinical impact and dealing with your clinician isn’t important, because it is. When you’re talking about chronic disease, rare disease, clinicians are part of your team. Now, what I would say about that is to have a clinician that sees you as part of their team is really important. Everyone has a role, whether it’s on a sports team – I’m a shooter. For me, I love to shoot, but I love to rebound the hell out of anything I can do, and realizing what you really are good at, right?  But I think at the end of the day, when it comes to that fourth overtime, your coach can’t do it for you. You have to rely on yourself to make those decisions and understand, “I’ve got to get me through. My team’s going to help me, but my team can’t do it for me, either.” So, first and foremost, I would say starting with that belief in yourself, and building that resilience, and understanding that “I can” mentality, not the “I can’t.”  If we rely wholly on clinical impact [00:40:00] on chronic disease, it becomes less about what I can do and more about what my clinician can do, and what the clinician can do is 5 percent of the rest of your life – how much time you spend in the doctor’s office. The rest of the time, you’re on your own. So, what are the things I can do in my own day-to-day life to impact my disease? There’s a lot of things you can do. The other thing is we talked a lot about the value of a team, and there are a lot of ways to set up your team as a circle of care, clinicians being one, but you need – whether it’s a caregiver, a friend, or professionally engaged people, you need to build a team that you’re comfortable with, that you can trust.  Trust is so important in those relationships. Just like on the court, where if I leave my man on defense, I’ve got to know that my teammate is going to come over and support me in my defender, so my person doesn’t get a shot in. You have to have that trust that that team is going to work together to pick each other up. The other thing is – we talked earlier – is knowing your opponent.  So, when it comes to disease, a lot of times – again, we rely so much on [00:41:00] our clinicians to know the disease. There’s so many great resources. You’ve got to find the right resources, and part of what I do is try to help people connect with what I can do with understanding the disease, to say – not just the clinical aspects, but what are the things that impact stress? We know stress, or a lot of things – you can eat great food, you can exercise all you want, but if you’re in a highly stressful environment all the time, which a lot of people with any kind of disease are, a lot of these nutrients aren’t going to be absorbed.  You’re going to be wearing yourself out more and causing the cycle of stress and the impact on your immune system. Does that make sense?

Michael Schulder:  Yeah.

Carey Kauffman:  So, helping people connect those dots between what they can do, what their clinicians are doing, what all the team is doing, but what I can do day to day to impact my health – that helps me have more confidence that I’m doing something, right? And that builds the resilience.

Michael Schulder:  And I keep on going back – it’s really resonating with me, what you talked about where if you feel like you’ve taken four or five shots and you’re just not making your shot, there are other things you can do. [00:42:00] You can be tougher on defense. You can go for the rebounds. There are so many different ways – this is now for the caregiving team – that you can have an impact.  If you feel you’re not having an impact in one way… Coming back to your family, because I always feel empowered when you talk to me about this stuff. I really feel energized. So, you’ve got your son now, who’s struggling with this condition. Cancer-free right now, correct?

Carey Kauffman:  Yes, thank goodness. 

Michael Schulder:  And has not had cancer?

Carey Kauffman:  No, has not. 

Michael Schulder:  So, it’s just one of those things you need to stay on top of. Some people would walk around stressed out – as a mother, stressed out every day.  You learned how to compartmentalize somehow, even going back to the student-athlete compartmentalization, and you’ve retained your sense of humor. So, your son has the benefit of having a mother and a father who have a sense of humor, which is probably critical, but tell me what else you’ve done that you think makes a difference in his life that can translate – or that empowers him – [00:43:00] that can translate to other people, both with rare diseases – and I think most of the people listening today, even if they’re perfectly healthy, there’s some issue in your life that can feel debilitating at times.

Carey Kauffman:  With my son, specifically – the one with Beckwith-Wiedemann – he’s six years old, and what I’ve been very careful – I guess I would say very intentional about – is, as it’s age-appropriate, for him to take the lead role in his own care.  So, in a completely unrelated situation, he happens to have a challenge with his vision. It’s unrelated, but he’s had to wear patches on his eye. A lot of times, people say, “How do you get him to keep that patch on his eye?” Not every child is going to do this, but every time we go into the eye doctor, I let him take the lead. I help him come up with the questions, and now, he asks his own [00:44:00] questions of the doctor.  He takes ownership of putting the patch on his eye, and we reinforce that. “Wow, you’re doing a really good job.” I think that, rather than – what I’ve seen in a lot of situations with people with a child that’s sick in some way – we’re very intentional. It’s just the way we operate. A lot of times, we tend to be very protective of the child that has the health issue, but what happens is as much as we’re trying to help that child, a lot of times, we’re creating a situation where they need others for them to do what they need to do.  We’re not allowing them to build their own resilience. We’re not allowing them to fail. We’re so concerned about them failing that we don’t allow them to build their own self-confidence, and you can only learn strength and humor through learning how to deal with struggle. I think that’s something that has been important to me, not just with my child that has a health condition, but I think that’s something that I’ve [00:45:00] been learning about.  You need to podcast things that are out there about the ability for parents to allow their children to sit in their struggle for growth, and I think that when you have a compromised health condition – just like the fourth quarter, everything is heightened. Everything is more acute. You’re training. All those things come together. You’re tired, but your team – you’re relying on your ability. All of those things are heightened. In a situation with a child who has a health condition, it’s almost more heightened in that situation.  They need that resilience, right? Also, another dynamic that I see with families with a child that has a health condition is that the other siblings become almost frustrated with that other sibling. It creates a dysfunctional dynamic in the family unit, when the family unit – the team of the family – needs to be working with each other to support each other.  So, we have to be careful and intentional about how we empower children – allow them to sit and struggle, but also [00:46:00] create the dynamics in a family setting that are supportive of growth and life-promoting, versus, “He gets all the attention, and why does he get to” – those kind of things, if that makes sense. Or, for my own son, he had a surgery that – basically he was born with a sac on the outside of his body. So, he actually doesn’t have a traditional belly button. It sounds very strange to say, but we joke about him having a designer belly button because the doctor had to create one for him.  Elijah didn’t know that he had a different belly button. He would just brag that he had the biggest belly button in the family, and we all celebrated that. Now, he wasn’t old enough to understand that we had to put his insides back in his belly. Again, there’s that humor. I’m sure people are really uncomfortable at this point. But for me, it was, “Yeah, that’s right, buddy! You have the biggest belly button! You have the coolest belly button!” So, when other kids say on the playground – because he likes to scratch his belly – “You don’t have a belly button,” he’s like, “What?” [00:47:00] He doesn’t understand that. The other thing I will say, too- this is just my love and my passion; I can’t help it.  But I think that – I try as much as possible… Staying in touch with a community of people that is experiencing similar things, whether it’s for caregivers or patients – that’s really critical, but I also think realizing when that’s healthy and when it’s not healthy, because what happens is – you talk about not that there’s not a reason not to be a squeaky wheel, but at lot of times in patient groups and patient settings, social media is a tremendous resource, but also, reminding yourself of when that becomes too distracting, or you have people that all they want to focus on is the negative.  Not to say there’s not a lot of negative there, but if all we’re doing is talking about the negative and it’s all we ever hear, I think that can be distracting and cause you to struggle. I think surrounding yourself with the balance of that is really important because I know for me, with my son that has this condition – and he’s [00:48:00] doing extremely well – but I could be sitting around waiting for him to get some sort of cancer.  There are a lot of parents on these settings that would just think about that. “How do you get by? How do you do this?” The way I look at it is – and not to say that I want everyone to have had the experience of having lost another son or a child in that way – but the way I look at is, “You know what? If that happens, if we see a tumor and it’s something that’s going to unfortunately” – we know that offense is a good defense in this case. That’s why we have, every three months, ultrasound. That’s the protocol for this disease until he’s ten, and after that, the chances are greatly reduced.  But for me, if we get a tumor, you know what? He’s not dead yet. You know what? I’ve experienced that, and anything short of that, there’s a lot we can do. We know how to treat cancer. We didn’t know how to address respiratory distress and pneumonia with my son that passed, but with cancer, we know how to treat it as long as we get it early enough, and that’s what I can control. I can’t control these other things. I think it’s recognizing where you can control [00:49:00] things and where you can’t, if that makes sense. And I have to give a lot of credit to my husband as well. We’re a team.

Michael Schulder:  So, here’s what I’m thinking, as we finish our conversation.  Most of us do not know – do not have a personal connection – with people who are in this rare disease world, and yet, listening to you now, both on basketball and on handling family members, or people you care about, or others with rare diseases, I’ve already learned some things that I might be able to apply to my own life, even though I’m not in that world, and I’m just thinking, “What an opportunity it would be for the general population to get more exposed to how people are as effectively as possible dealing with rare disorders,” and the tools that requires, and how that can be applied to everybody’s life.  Everything you’ve said [00:50:00] to me resonates me on level in terms of the basic, everyday challenges that we all face. Any thoughts on how to connect…?

Carey Kauffman:  Connect those dots? Absolutely.  For me, I’m just… I think that I’m always looking for the way to connect the dots, and in terms of people – whether or not you have an illness, a lot of what I’m talking about is as much prevention as it is stopping the – or at least, making the most out of living with something that you have. So, a lot of what I’m talking about is mentality, is having the right mindset, the empowered mindset, and that applies no matter if you’re sick or not.  But I would argue that if you’re already compromised with a health condition, the premium on getting that in check is even more important.

Michael Schulder:  So, final question: You’ve experienced all the way through four overtimes. You [00:51:00] lost that one. You remembered the score – it clearly left an impression.

Carey Kauffman:  Oh, yeah. You never forget that. Two Hail Marys, by the way.

Michael Schulder:  So, final question: For those people who feel, at this moment, like they’re going into a fifth overtime in life, what do you say to them?

Carey Kauffman:  You’re worth it. You’re worth it. That’s one thing that just comes to me, and you can do it.

Michael Schulder:  Carey Kauffman, thank you for joining me on Wavemaker Conversations: A Podcast For The Insanely Curious.

Carey Kauffman:  Oh, thank you. It's been a pleasure. 

Michael Schulder:  listening Wavemaker Conversations: A Podcast For The Insanely Curious. If you find this podcast enriching, I hope you'll subscribe for free on iTunes. Or you can go to my website, wavemaker.me. Once you subscribe for free, the weekly episodes are delivered automatically to your phone or  [00:52:00] computer. And then, every traffic jam, every train ride, every flight becomes an opportunity to get smarter. Thanks to my editor, Brian Morris, I'm Michael Schulder. Thank you for listening Wavemaker Conversations: A Podcast For The Insanely Curious.