The Unspoken | Ep 15 | CKF Awards 25/26

Join Anna as she sits down with the 2025 CKF Award Winners as they share their journeys in the transplant and donation community along with what inspired them to continue giving back and supporting others. 

We will also be announcing the 2026 CKF Award Winners! 

Transcript

SPEAKER_02 0:06

Hey everyone, welcome back to the Unspoken Podcast. My name is Anna Morgan Piloty and I'm going to be your host again this week from the Chris Kluke Foundation. A big thank you to everybody that has uh subscribed or followed this podcast. If you haven't already, please do so. It helps us keep it going and keep talking about all the things not discussed surrounding transplant and donation. Um I'm really excited today is the day we get to announce our 2026 CKF Award winners. So stay tuned for that later in this podcast. I'm going to be chatting with our 2025 CKF Award winners. First, before we dive into all of that, let's catch up with what CKF has coming up. This is the last day of Donate Life Month. So if I haven't said it to you already, happy Donate Life Month. And today we recognize and honor all those individuals that made the decision to become uh organ donors and leave a lasting legacy and the families that helped them do that. So if you are a donor family or a living donor, thank you so much for making the decision to save lives. I have family members that had their lives saved by organ donation and your decisions. So I just want to say a big thank you. We are looking at so many things coming up. It does not stop here at CKF. So first up, if you are local to the Aspen area, on May 12th, we will be hosting a blood drive at the Aspen Middle School. You can sign up through vitalent.org or through our website. Following that, in New Orleans, our ambassador, superstar ambassador Jeremy Nicolsi, is hosting the third, yes, third annual Blue Ducky 5K Waddle in honor of his sister Stephanie, who was a donor when she passed. It has a virtual component too, so you don't have to be based down in New Orleans. You can be anywhere to participate. And the funds raised will go to support our programming and continue spreading the awareness for Organite and Tissue Donation. At the end of the month, uh we will be heading down to Kansas to Emporia for Unbound Gravel. This is the world premiere gravel race. And we have 10 riders taking up the challenge this year. Blenders for Organite and Tissue Donation as well as funds. We will be biking 100 or 200 miles across the Flint Hills. So if you're in the area and love to come on, cheer, come on down and cheer for some great riders. We would love to see you there. Um if you haven't checked out their stories, please do so. There's some incredible stories. And then lastly, like many of you, we are counting down to the Transplant Games of America, which are gonna be here in Denver from June 18th through the 23rd. Um, so if you haven't signed up already, you are running out of time. So make sure you sign up for the Transplant Games in your local team. We will be there all weekend sharing the message and celebrating the gift of life. And I did forget, right before that, another one of us volunteers, uh Ian Pawley, will be hosting New Liver New York, um, which will be a tip-to-tip walk across Manhattan in honor of his liver liver, in honor of his liver versary. I am struggling to speak today. I am so sorry. So you can sign up for that or learn more through our website. That will be on June 18th in New York. I'm really excited to be joined today by our 2025 CKF Award winners, Ahmed and Nudi and Patty Graham. Um, Patty was our hero award and Ahmed was our bounce back give back award. Randy is gonna be joining me tomorrow to kind of catch up uh what we chat about today. So thank you guys for joining. So I'm gonna start with you, Patty. Can you walk us through, you know, you're a kidney donor? What inspired you to make the decision to become a kidney donor?

SPEAKER_03 4:00

And how did that process look for you? Thanks, thanks for asking and happy to be here. So, how it started for me is my sister donated, and she donated 24 years ago now to our at the time stepdad. Um so she directly donated to him and uh saved his life. It was amazing. Then he still has her kidney to this day, which is he's now had it longer than she had it, which is kind of cool. So she did it first, and I I didn't really think much about it. And then I was at an event uh with some friends, including my sister, where the people were giving these these five-minute talks about things they're passionate about. And this woman gave a talk about how a stranger donated a kidney to her brother and saved her brother's life. And as soon as I heard it, I looked at my sister and said, I'm gonna do that. And she said, I know. And I did so that's what inspired me. It's just that I found out you could give your kidney to a stranger. I didn't even know it was a thing. And when I found out, I just knew then I would do it.

SPEAKER_02 4:54

That's amazing. I love that it was to a stranger too. I think that's always like makes it even more special. Yeah, that's incredible. Yeah. Ahmed, do you want to give us a little rundown? You're a liver recipient, um, about your journey, which looks a little different to a lot of people's because you had to move a whole country.

SPEAKER_00 5:15

Yeah. So uh thank you very much for having me here and uh I'm happy I'm happy to talk about this a bit. So I'm a liver transplant recipient due to a rare birth issue which is called biliaritesia, which affects like in the US one 18,000 live births, one fifteen thousand. And I had a rough journey. There had to be done initial surgery that um no one knew how to do back home in Lebanon. Eventually someone came from the US and did it. I lived a good 15, 16 years of life, and eventually I um started developing issues with my breathing due to the cirrhosis in my liver, and I had to get a transplant, which does not exist also in Lebanon. So I had to travel abroad with just my dad and I and get listed in a foreign country where we do not speak the language. And I eventually did get a transplant on August 6, 2013. Unfortunately, I thought I was out of the woods. Post-transplant, it was much rougher than pre-transplant. Post-transplant, I caught a series of infections. I developed acute injection all within the span of two months. And eventually, so I had my transplant in August. By November, I developed what's known as BTLD, which is a B cell non-Hotchkins lymphoma. Stayed under treatment for around a year, and now I'm here. I'm fine. And so I was given the gift of life, and I've been trying my best to use it as much as possible.

SPEAKER_02 6:32

I think so many people think that transplant you're like up and out of bed the next day and you're ready to go, and forget that quite often the process is a little longer and it's you know a little more in-depth than that. It's amazing. Patty, I want to touch back to to you. Did you know that you could donate to someone non-directed before you heard this lady talk, or did that kind of become new news to you?

SPEAKER_03 6:57

It was new news, yeah. I had no idea. And I'm a nurse, and I still had no idea, never heard of it. And so just happened to be at this right place, right time, and heard about it. So then since then, you know, I've just always trying to spread the word about it. Because I think for some of us, you just hear that you can do it and you just know you will. It's just like a like a switch, I think. So it's amazing.

SPEAKER_02 7:18

And so you just brought me right to my next question. Since you've donated, you've not just donated and sort of been like, that's it, I'm done. You've stayed in the community and you've tried to spread that word. Can you kind of talk to that for a little bit and what you've been up to?

SPEAKER_03 7:31

Yeah. So since I donated, I didn't realize that when the word needed to get out, so people would know, like me, who don't know about it. So I started, um, I started working with a nonprofit and I ended up working for them for a few years as a kidney donor mentor. So I mentored donors through the process. And um, I think I had over 10,000 referrals when I was when all was said and done when I left that role. And the other thing I did is I started something called One Kidney Clubs, which is a way for kidney donors to connect to other donors, build community, have support from other people who have donated, or just even pre-don, talk to other people who have done it and really find out what it's like. Um, in One Kidney Clubs, now we have over 50 all over the world.

SPEAKER_02 8:13

That's amazing. And it's, I mean, it's not an easy process to become a donor. In some ways, it's a very in-depth, complicated sort of step-by-step because they want to make sure that it's a match. They want to make sure you're okay with donating, your health is in a good place to donate. So I think getting connected with other people would be critical pre-don.

SPEAKER_03 8:33

Yeah. Yeah. It's, I mean, it's the best physical of your life. Getting screened to be a donor. They really want to make sure that you're healthy physically and mentally. So they are, they are really uh screening you hard because they don't want to put you at risk by being a donor. And so there aren't a lot of us that have done it. There aren't enough of us. And uh, and so it is really nice to support people prior to donation and give them a, you know, tell them what it's like and and sort of like hold their hand and step them through. So yeah, it's a privilege to do that actually.

SPEAKER_02 9:01

It's amazing. And if someone wants to join the One Kidney Club, where are they heading to?

SPEAKER_03 9:05

Yeah, onekidneyclubs.com and we have all the clubs listed there. And if someone's already donated and there's not a club in their area and they want to start one, just reach out and uh the information to reach out is on the website and happy to help people get other clubs going and and just build community and spread the word.

SPEAKER_02 9:19

I always love I feel like donors are such special people to be able to to decide you want to be a cup become a living donor is a really incredible decision to make.

SPEAKER_03 9:28

Um yeah, and I I've made the best friends of my life through donation. I mean, my my best friends are all donors, and it's not because I got my friends to donate, it's because I made made more friends after donation with people who had already done it. So it's a very great decision. It is, yeah. And it's just like a it's a really unusual way to connect with someone who's done it, you know? Like it's just since there aren't that many of us.

SPEAKER_02 9:51

Yeah, definitely. And you don't know what it's like until you've done it, right?

SPEAKER_03 9:56

Exactly.

SPEAKER_02 9:56

Yeah. Yeah. Ahmed, um, I'm gonna come back over to you. And can you kind of explain? You know, you took your experience to a whole new level and went into the field of transplant. Um, what inspired you to do that? What do you do now? Give us give us the download.

SPEAKER_00 10:14

Okay, of course. So uh I think with my experience, it was like um there's a lot of room to grow in the transplant field. The transplant field is a multidisciplinary complex field, whether it's liver, kidney, heart, lung. You're talking about a field that requires surgical care, medical care, nutritional care, uh, there's life medication. I think one mentor I had told me a very beautiful saying is like you go from a life-threatening disease to a chronic disease. So, yes, hopefully you're not gonna die anymore, but you are like any diabetic patient or any patient living with an illness all your life. And so, given my experience and given that I was a bit of a studious kid in high school, I decided to take the path of medicine. And so I did four years of undergrad with a minor in biomedical engineering, and I joined medical school, graduated, did two years and three months of research here in Texas, in the University of Texas Southwestern. And now I'm finishing my pediatric residency. I start fellowship in September and gastroenterology and hepatology have officially matched. And so uh I and I'm on the physician scientist track. I'm not just on the regular pediatric track. And the goal of my life has been to become a funded physician scientist who deals with transplant recipients in the pediatric population, specifically liver, and to try to understand the field more. There's a lot of gaps, a lot of kids die on the wait list, a lot of kids have very poor transplant outcomes. And I'm not just talking about death, but also like post-transplant, they have uh a lot of complications that cause the quality of life to go down. And given that I was in that position, I just want to make sure no kid dies on the wait list and no kids have no kid has a rough transplant. I'm gonna put all my effort clinically and in the research space to change that. And so this is the decision I took. My wife supports it. I'm just not at home most of the time. Or if I'm at home, I'm on the laptop. So work-life balance has become work-work balance. But I think I've been given the gift of life, and as long as this liver is running, I'm using it to the maximum.

SPEAKER_02 12:09

That's so inspiring. There is too many kids uh on the transplant. There's too many people, period, on the transplant wait list. But I think it's always tough when you see a kid who's waiting for somebody just to say yes, or you know, is waiting for that life-saving gift. And it's not just on them, it's on the whole family. Um, definitely. And work-life balance, I I can I can get behind that. I think anyone that works in this field is like, When was my last day off again? What I do for fun. I spent my weekend in Wyoming at a donor dash, and I'm like, that's not what other people do. That's so weird.

SPEAKER_00 12:44

I talk to my residency friends and fellowship friends. I'm like, oh yeah, I go back home and do research. I'm like, and this is residence, by the way. We're clocking 70 hour work weeks. You do research when you go back home. I'm like, yeah, how am I publishing this much? Like, everyone's like, I'm dead when I go back home.

SPEAKER_02 12:58

So yeah.

SPEAKER_00 13:00

This gift of life has gone a long way the last 13 years. So hopefully it stays.

SPEAKER_02 13:05

Right? I love it. So let's kind of talk about you guys are both CKF award winners, and you both came out to Aspen last year and were guests at our wine in Dangala. What was that experience like for you getting recognized and and getting celebrated at the event? And since either one of you. I'll open it up.

SPEAKER_00 13:24

I can start if Patty is okay with that. Yeah. Um I think uh to say that it was somewhat life-changing, I wouldn't understate it in a different way. I think a lot of the work we do and a lot of the effort we put in that goes especially towards Patty, is is very altruistic and you do things not for your own personal gain. You know, I'm sure she donated not for clout or fame, but she did it just to help someone. And for me, I went into medicine not because I wanted to make something of myself. I did it purely just to help others and make sure no one goes through the same experience I went through. But the journey is long and it's very tedious, and there's a lot of ups and downs in the road, especially as a recipient. And there are days when I'm stuck in the hospital and I've ran my health to the ground sometimes because of the amount of work I do. Like just in 2024, I was admitted four times just because of how sick I would get. These while it is tough to handle this aspect, having these moments where you are celebrated for the work you do is monumental. It's never about the celebration itself, but it's about like, hey, there's eyes on the work, there's effort. People are really realizing that maybe what I'm doing has some benefit to society, and it just gives you a perspective that you see outside. And it also connected me with great people. I will have to say, like, but we've not stayed much in contact since the award, but I have been in contact, constant contact with Dr. Stafford or Randy, who's the other recipient, and he has become a mentor of mine to the point that I submitted an NIH grant last two weeks ago with his name as my mentor. And so it was yeah, it was life-changing as a career. Like I met people and meeting Chris on his own, who is a phenomenal athlete and changed the way we look at transplant recipients post-transplant. And he is a liver transplant recipient, which I'm biased towards. So it's great.

SPEAKER_02 15:12

We won't hold it again.

SPEAKER_00 15:14

Yeah, so I think this has been, to say the least, life-changing. Meeting people like Dr. Stafford, meeting people like Chris, meeting people like you, Anna, and Patty, and uh and having the work I do recognized in a way that makes me want to push forward and realize the merit on its own when the times are tough really was something. And the whole trip was phenomenal. Like it was an amazing great break for me and my wife very much so.

SPEAKER_03 15:35

Yeah. I should have gone first. You like sent all the good stuff. So everything you said. Uh it was yeah, it was amazing to meet everyone and be part of it. Everyone's was so kind and generous with their time and just what an event, like beautiful, beautiful event to be part of. And I also felt really lucky because my sister attended, and so did one of my best friends who's also a donor. And so it was really nice to share share the experience with people I love as well. So so yeah, it was it was amazing.

SPEAKER_02 16:02

It was a it was well that the photo of you guys is like my favorite one to use for everything. I swear I've used it on every one of our website pages of the three of you at Wine and Dine. Um, it was it's such a cute one. I'm like, yes.

SPEAKER_03 16:17

Yeah. We're putting up our one finger for one kidney. That's what that is when we do that. Like, we're not number one, it's like we have one kidney, so it's our it's our sign.

SPEAKER_02 16:28

I just want to say it is such an honor to have been able to recognize each of you and celebrate everything that you do for the community. And I think these awards have always been something to inspire others to look to and say, you know, they're doing that. I can get out. And whether it's, you know, you don't have to start your own nonprofit or go into the medical field, it could just be you got up today and you walked to your mailbox or you wrote a story about you, you know, your journey that inspired somebody else. On I think it it continues to have a lasting impact. Um, and it's kind of like leaving a second legacy, right?

SPEAKER_03 17:04

Ripples, lots of ripples.

SPEAKER_02 17:05

And now we get to do the exciting bit of announcing our 2026 CKF Award winners. And this year was incredible. We had over 56 nominations, which is our biggest year yet. Um, and I can honestly say I was left in tears laughing, went through every emotion, reading through everybody's nominations. And if we could award everybody, I would 100% award everyone with something because they are just phenomenal. But I'm so excited about this year's award winner. So I'm gonna let Patty kick us off with our hero winner.

SPEAKER_03 17:39

Yeah, and I'm so excited to announce the hero winner for this year and pass the torch on to donor mother and founder of Smiling Wyland Foundation, Kristen Cohen.

SPEAKER_02 17:48

Yay! Thanks, Patty. Congrats, Kristen. Uh Ahmed, you're up next.

SPEAKER_00 17:54

So this year's Bounce Back and Give Back Award winner is a hard translated recipient and founder of the Bonus Day magazine, Alison Conklin.

SPEAKER_02 18:01

Yes.

SPEAKER_00 18:01

And I apologize if I butchered the last name, but congrats.

SPEAKER_02 18:05

Yay, congratulations, you guys, and we'll be in touch about bringing you out to Aspen this year for the 2026 uh wine and dangala. If everyone hasn't got it on their calendars yet, uh join us August 28th at the Snow Mask Club um here in Aspen. This is gonna be our fourth summer wine and dang. We're super excited to have you join us and celebrate everything you've given to the community. And I just want to say a huge thank you to our 2025 award winners for joining me today for all of their hard work and commitment to the cause. So thank you guys. Yeah, thank you. Thank you. Well, I'm super happy to uh be back on the conversation with you, Randy, and have you joining me here as our 2025 community champion. And it's a great time to celebrate, you know, everything you've done in the transplant community and why we celebrated you last year. So I just wanted to start off with can you kind of walk us through your transplant journey and what's got you here today, uh, and kind of what that journey looked like for you.

SPEAKER_01 19:07

Yeah, well, thanks so much. So it's been a long journey. I uh was diagnosed with kidney failure when I was 25 years old back in 1982, and I received a uh kidney transplant from my younger brother Derek in '84 after being on dialysis for about a year. And uh that transplant really did well and lasted for uh 21 years. And uh back in 2005, I had a second kidney transplant, and that one has lasted uh more than 21 years. So I'm uh, you know, I'm now 42 years post-transplant and um doing well. I really feel like the whole kidney disease and transplant journey changed the trajectory of my life and uh headed me in the direction of wanting to serve other people. And uh I am currently uh primary care physician and professor at Stanford. And uh really, you know, I have very I feel very privileged to have the background that I have and to contribute to the the lives of other people.

SPEAKER_02 20:20

So how many years total for the two kidneys?

SPEAKER_01 20:22

Forty like uh just a lot more than uh 42 at this point.

SPEAKER_02 20:27

That's incredible. That's amazing. Okay, I always love um hearing the longevity of kidney transplants. Well older transplants, but I think kidney seems to have a longer longevity than some of the others, maybe. That's amazing. And so you kind of touched on it, but since you've had your transplant, you know you've really delved into this world of transplant and have helped others through through the process and with research. Um, so can you kind of talk about that a little bit? I know you're super involved with uh world transplant athletes and work and a bunch of other things. So give us the rundown on that.

SPEAKER_01 21:04

Yeah, I have uh many interests, and uh certainly being involved in the transplant community is one of those. I think that my own research focuses on how people can be more involved in their own health care, how they can contribute to their well-being by kind of being an active part of their healthcare journey. And that remains a really important kind of concept for me that really started as I was getting my transplant and learning about kidney disease in the transplant process. So I very firmly believe that our healthcare system really should be asking people for their opinions and for their work in determining what kind of experience they have in healthcare. I think far too often there's a certain paternalism in healthcare of the doctors kind of feeling a Like they know best for patients. And I think while that helps some of the time, most of the time I think it leads to outcomes that aren't necessarily the best ones for patients. So again, you know, part of my message that I carry into my work, um, both in my research work and in the transplant community, is really to get patients involved in their own care, to learn about their conditions and really see their doctor as a resource that helps them, not necessarily, you know, the manager of their healthcare lives.

SPEAKER_02 22:33

Who knows your b body better than you know your body?

SPEAKER_01 22:35

I mean, Exactly.

SPEAKER_02 22:36

The number of patients I've heard who said, I knew something was wrong before the doctors, you know, who've had their transplant and were experiencing rejection and things, and they're like, I knew something was wrong, but my doctor kept telling me my rejection numbers, you know, were normal and they weren't there, and then a couple weeks later or a month later, I'm facing rejection. Um I've heard that a few times.

SPEAKER_01 22:58

So I think definitely key to the And there really is so much that people can do to, you know, to help themselves and um regardless of whether they have conditions like kidney disease. So I I'm a big advocate of exercise and physical activity. I think it's one of the most effective strategies we have for preventing and even treating mini chronic diseases.

SPEAKER_02 23:23

Definitely. And so you came out um last summer for our 2026 CKF Awards. Can you kind of talk about that experience? I know we were just talking before we hit record about how you and Ahmed, one of our other award winners, have gone on to do some work together. So tell us all about your experience.

SPEAKER_01 23:41

Yeah, I had a wonderful time visiting Aspen last summer. You know, for me, it was a great experience, not only to be in that great environment, but to meet these people for the first time who really had amazing histories. You know, I took a particular liking to Limed and his wife, who we hung out with quite a bit at uh during the festivities and before and after. And uh, you know, I'm continuing to work with him. He is a budding gastroenterologist, very interested in liver transplant, in part because he himself is a liver transplant recipient. And uh also really had a great time uh hanging out with uh Patty and Ian, one of the other awardees. And uh it was just a great time also to with the staff of CKF as well as uh as well as hang out with Chris himself.

SPEAKER_02 24:37

Having you. You're always welcome back anytime you want to come back. One year I keep saying I really want to do like a like an awards all-star where we bring everybody who's won previously out.

SPEAKER_01 24:49

That would be wonderful.

SPEAKER_02 24:50

Right? I think it'd be so fun. Um I wouldn't get any work done for ahead of it. I'd be too excited. That's it.

SPEAKER_01 24:56

Well, I especially appreciate that all the work that went into organizing the event and uh and having the award recipients there to talk about their experience. I think that that sort of event was very meaningful to me.

SPEAKER_02 25:10

Yeah, it's my favorite one of the uh I'm always left in tears by the end of it. Amazing. Oh, now we have the really difficult job of announcing the 2026 Community Champion Awardee, um, who I'm very excited to give Randy the opportunity to let us know who's who's our winner in 2026.

SPEAKER_01 25:30

Yeah, it's my pleasure to think about this community champion and to announce that the winner for 2026 is a great surgeon by the name of Osama Gaber. And uh he's from Houston, and I think that you're all gonna enjoy meeting him and getting to know him.

SPEAKER_02 25:50

Thank you, Randy, and congratulations to Dr. Gaber. We're really excited to have you join us here in August for our wine in Dangala. As I said previously when I was chatting with Ahmed and Patty, if you haven't got your tickets, they will, well, you haven't got your tickets because they haven't gone on sale yet. But they are going on sale May 15th or August 28th, and we'd really love for you to join us out here in Aspen. Um, as always, Randy, it was an amazing pleasure getting to speak with you and hear your story again. And thank you so much for everything that you've done for the transplant community. And we were honored to recognize you as our 2025 community Ed PN.

SPEAKER_01 26:27

Well, thanks so much, Anna. Great being with you and great to see you again.