The Kidney Collective: "I'm Not Just Here for Basketball"

Alonzo Mourning: I was given this amazing opportunity to make a difference in other people's lives. And that's what it was all about. Me going through the pain and the discomfort just for me to make a difference in somebody else's life.

LaVarne Burton: Hello, I'm LaVarne Burton.

Tamara Ruggiero: I'm Tamara Ruggiero.

Mike Spigler: And I'm Mike Spigler.

LaVarne Burton: Welcome to season two of the American Kidney Funds Podcast, The Kidney Collective, which gives an intimate voice to the many facets of living with kidney disease.

Tamara Ruggiero: Our theme for this season is Rare Voices Relatable Stories.

Mike Spigler: Over the next few months, we'll be talking about rare kidney diseases and explore the shared experiences that connect the entire kidney community.

LaVarne Burton: Join us for these candid conversations that offer both information and inspiration. Hi everyone, and welcome to a special episode of the Kidney Collective dedicated to APOL1 mediated kidney disease. We're bringing you this conversation on AMKD Awareness Day, which is observed annually on the last Tuesday of every April. And we hope that this will in turn spark conversations within your families and your communities about AMKD. This year, AMKD is April 28th. Today's episode is supported by Vertex Pharmaceuticals, sponsors of AKF's AMKD Awareness Day and APOL1 education programs. For those of you who may not be aware, AMKD is a genetic form of kidney disease that is caused by variants in the APOL1 gene. We all have two of those. And if you're Black, African American, African, Afro-Caribbean, or Hispanic Latino and of certain African descent, you're more likely to have the inherited variants in that gene. And if you have variants in both copies of the genes, you have a greater likelihood of developing the serious disease. Today, we're honored to have someone who has shared his own AMKD story to help raise awareness and to educate communities. Alonzo Mourning. Alonzo and I have had the great opportunity to work together on a number of other occasions. Alonzo is a basketball hall of famer, an Olympic champion, and an NBA champion who is now inspiring countless people through his humanitarian efforts and his kidney health advocacy. Welcome, Alonzo.

Alonzo Mourning: Thank you, LaVarne. I'm really humbled and grateful that you have me on the podcast. LaVarne, I just want to thank you for your advocacy and all the work that you're doing in the kidney health space. You know, it's so much needed, you know, especially because it's affecting millions and millions of people, not just in our country, but around the world. You know, so uh every voice that we have educated is extremely important. So thank you for what you do.

LaVarne Burton: Thank you so much, Alonzo. And I I certainly want to thank you. But before we start talking about AMKD, I want to talk a little bit about basketball. I know that the Miami Heat had a really exciting night last night.

Alonzo Mourning: Yes.

LaVarne Burton: So maybe our audience would like to hear something about that.

Alonzo Mourning: It was a historic night where one of our players that we drafted nine years ago, we drafted him number 14 out of Kentucky. And uh I tell you, when we drafted him, considering Bam coming from very humble beginnings, single mother grew up in a trailer park, and uh he grew up hungry and loved. And um to see him develop over the nine-year period to the player that he has developed into today, and to score 83 points to to be the second most highest scoring game in the history of our league is a testament to uh to the incredible work that he has put in. I'm so proud of him. I told him last night, you know, when he was walking into the locker room, you know, we stood in the tunnel, me and Pat Riley. We hugged him and just let him know how proud we were of him, you know, of this incredible accomplishment, you know, very historic and monumental evening uh to witness, you know. So it's very rare that you witness uh evenings like that. And that was uh that was one of the best I've ever seen.

LaVarne Burton: You and I have talked a lot, but I've never asked you this question. You I mean, you went from, I know basketball was probably a lifelong dream for you, and you you went to Georgetown and then you got drafted into the NBA, and bam, here comes kidney disease. And you thought for a while that you would have to give it up. But you came back.

Tamara Ruggiero: Right.

LaVarne Burton: And you not only came back, you made the Hall of Fame. After everything that you had endured in your journey, what did it feel like at that moment to be named to the Hall of Fame for basketball?

Alonzo Mourning: Well, it's the pinnacle of your career, uh, of any career, any sports career, to be acknowledged and to be enshrined and identified as one of the best who have contributed to the game of basketball. So there's a fraternity, a small fraternity of us that uh that are inducted every year. I was fortunate in 20 in 2014 to have been identified as one of those individuals. And I'm grateful. You know, I truly am, you know, considering all the obstacles I've had to overcome as a person as well as a player, health-wise and what have you, and to still have been able to climb the mountaintop and achieve um, you know, the ultimate prize.

LaVarne Burton: That's really tremendous. Uh tremendous for anybody in the sport, but especially for someone who has had as many challenges as you have had. So I know you've heard it so many times, but congratulations again.

Alonzo Mourning: Thank you. Thank you, LaVarne. I appreciate that. That means a lot. And it's something that nobody can ever, ever take away from me, you know. So, you know, my when I'm dead and gone, you know, my grandkids will be able to visit Springfield, Massachusetts, see their grandfather enshrined in the Hall of Fame, you know. So that's a blessing. It truly is.

LaVarne Burton: Yeah. And and you've turned back and given your blessings back to the community. You and your family have worked with underserved communities in South Florida, as well as working as an advocate for the kidney community. What inspired you to give back in that way, both in the community and through your advocacy for kidney disease patients?

Alonzo Mourning: Well, you know, LaVarne, you know, what has inspired me most is understanding where I came from. We all have journeys. And in the beginning of my journey, you know, I think of these angels and the people that planted seeds in me, you know. All the listeners, and I'll I'll speak for you as well. We're all here because of other people's contributions. I'm so grateful for those angels in my life, coaches, teachers, family members, my foster mom, family three, my biological parents, you know, what they did for me. You know, the contributions that they made, you know, and I say to myself, wow, you know, why am I the special one? You know, why why did I get a chance to benefit from all of that? Because there's a lot of kids that didn't have those angels that that kind of fell to into a victim of circumstances and unfortunate circumstances. I'm very grateful to have had them in my life, and I wouldn't be sitting here talking to you without them, you know. So understanding that, LaVarne, I knew that I had a responsibility to pay it for. And so what they instilled in me, you know, and my foster mom especially, you know, she was a very giving person. She was a faith-based woman. She was a retired school teacher, you know, so she she taught me how to value her education. She taught me so much about responsibilities of being a man and being respectful. Um, but more importantly, she taught me a lot about God and and and having faith. And she helped me understand that that part of that responsibility is service to others. And uh I didn't quite realize it until much later. You know, I received a life-saving transplant, so many different other blessings that I received along this journey, and I realized that, hey, you know, I'm not just here for basketball to entertain people. I'm here for a lot more reasons than that. I'm a strong believer that life is about relationships. And I took advantage of the relationships that I had, you know, and I created my foundation where we provide educational opportunities to thousands and thousands of children and families in the inner city. All our services that we provide and graduating 100% of our kids from high school, or 90% of our kids go to college and graduate, mainly all first-generation scholars. All of what we provide are free of charge. They don't pay one cent. I look at it as God's work. He's just doing his work through me, and I'm I'm just I'm so grateful for the opportunity to just give back. And also, this kidney situation that I had to deal with. Been 22 years, you know, post-transplant now. You know, adversity introduces a man to himself. So I went through this life-changing situation. I said to myself, wow, you know, what good can come out of this? And the good that has come out of this is being able to have a conversation with you about this and to be able to speak to other people personally about what I've gone through to encourage them to take a better approach and be proactive with their health, you know. So service, that's what it's all about. Giving back, making a difference.

LaVarne Burton: I love that expression. Adversity introduces a man to himself. And I can tell you, as a mother myself, that your foster mother, you know, I know would be so proud of everything that that you've done and that you are doing. Let's talk a little bit about your kidney disease journey. When were you first diagnosed and and and what symptoms did you have that led you to seek a diagnosis?

Alonzo Mourning: I was first diagnosed in 2000 at the Summer Olympics in Sydney, Australia. And in 2003, my nephrologist and healthcare team concluded that I needed a kidney transplant, you know. But initially, when I was first diagnosed, I I noticed lethargy and and uh swelling in my legs and what have you, and I kind of ignored it because I was ignorant to the symptoms of kidney disease, you know, and that was the last thing on my mind, you know, because I was still playing in the Olympics. I was actually still competing for a gold medal when I was dealing with all these symptoms, you know. So I fought through it, and it's a testament to how great a shape I was in, you know. So I fought through everything, you know, ended up coming home, winning the gold medal and everything, winning Olympic player of the year at that time, Olympic basketball player of the year. So it's amazing how with all the symptoms I was dealing with, that uh I was still able to compete on the court at the level I was able to compete at to win a gold medal. Talk about mind over mind. Then I came back to get ready for the season, and that's again, that's one of my nephrologists and my health care team noticed these abnormalities in my body chemistries. And through that, you know, they recommended a nephrologist, and they they did a biopsy, and then the rest was history. You know, they found out that I had a rare kidney disease called focal segmental glomerulosclerosis. It's a disease which I later learned was a form of AMKD.

LaVarne Burton: And at that moment, when you you're coming back from the Olympics, normally you come back from the Olympics and you have a parade or you go to the White House or something like that, you you did those things to celebrate, and then you were headed to the doctor. And and somewhere in that journey, the doctor said, you know, here's this very young man. I just won a gold medal at the Olympics. And the doctor says, You're approaching kidney failure. And and how did that feel at that moment that you were doing?

Alonzo Mourning: At the time, you know, I'm gonna tell you when I got the news, LaVarne, my head fell in my hands, and I asked God, not why me, but why right now? Because, you know, I'm a strong believer that we plan in our calendar every day. We do. We always talk about, you know, our calendar, what we got to do every day. But God guides our steps. You know, I had these intentions to go into the season and start the year off and get ready for this, you know, a championship run. Pat Riley had made some trades, you know, and brought some new players in. I was ready to go, you know, and I was like coming off this amazing year where I was first team on NBA and you know, defensive player of the year, you know, all of these accolades, and then bam, you know, life just happens. You know, I felt like I was a picture of health, and I was at the top of my career. Scared for myself, for my family, I was overwhelmed. Um, but now I I realized, you know, I was given an opportunity to help others. That's what it was all about. I was given this amazing opportunity to make a difference in other people's lives, and that's what it was all about. Me going through the pain and the discomfort just for me to make a difference in somebody else's life.

LaVarne Burton: Absolutely, and what a difference you've made. And then they told you that you have to have a transplant. How do you go about finding a donor?

Alonzo Mourning: I was I well, I'm fortunate enough to have my mom has five sisters and five brothers, so I have a lot of cousins and uncles and aunts, and my dad has two sisters. So I I had a lot of options. I had a big family, you know. So I had a lot of people come in. They came to New York and they all got tested. I had about 30 people come in. It was pretty amazing.

LaVarne Burton: You had your own tribe.

Alonzo Mourning: Yes, yeah. At the time, my grandmother was battling cancer and um my dad's mom, and she was in Virginia. So I was in New York, you know, prepping and getting ready, you know, to figure out who would be the donor. One of my cousins that I hadn't seen on my dad's side, I hadn't seen him in over 20 some odd years when we were like babies. That was the last time we had seen each other. My second cousin, Jason, my grandmother is his aunt. So he drove to Virginia from New York to visit his aunt, my grandmother. My father was in the in the hospital room when Jason arrived. And while they were in the hospital room, on the TV in the hospital room, Sports Center announces that Alonzo Mourning has to retire from a game of basketball. He needs a life-saving kidney transplant. So Jason looks, he's at my my grandmother's bedside and he looks at my father and he said, Hey, you know, Alonzo doesn't know I live in New York. But please tell him if he needs me uh to give me a call, I'll come in and get tested. So about a week later, my grandmother passed. So it's amazing how my grandmother's death brought me life because shortly after that they chose Jason as a donor. They chose him as a donor. And I was a recipient. So I was listen, I was just so grateful to have him come back into my life at that time. And I don't believe in coincidences, I really don't. Yeah. I believe that was you know all by design. I truly believe that was by design. So here I am 22 years later, with that transplanted kidney, and I'm still trying to trying to get this thing to work for another 20 years.

LaVarne Burton: Originally, the doctor said that you have focal segmental glomerulosclerosis, FSGS, we're gonna say, to keep it short. And then along came some years, and you found out about APOL1 variants. These tests weren't available when you were first diagnosed. Tell me about how you got involved. Um, what you you were one of the first to join the study. What got you into the studies about APOL1?

Alonzo Mourning: Uh so at the time of my kidney diagnosis, the link between APOL1 genetic variants and kidney disease hadn't even been discovered yet. So years later, my nephrologist told me uh about a research study that was being conducted to help better understand the type of kidney disease that I had. So my nephrologist said that they were looking for additional genetic samples from people who had this kidney disease. After discussing it further with him, you know, I had to trust that it was the right decision to participate. Because I had built such this amazing and strong relationship with my nephrologist over the years. I felt comfortable with having these discussions, you know, and something that I want to tell the audience, you know, that, you know, it's tough uh with doctors trying to find the right doctors and building the trust that you need in, you know, in these medical practitioners. It really is tough, you know. But as soon as you find one that you feel as though has your best interest and you feel comfortable with opening up, I ask that you be transparent because that's the only way that they're gonna be able to really help you the way you need to help. So in 2010, the study was published as a prestigious scientific journal, and the results showed a link between having two APOL genetic variants and kidney disease. As part of the study, they had analyzed 205 African Americans with this type of kidney disease, and and I was one of them. So participating in this uh study cell it it felt pretty significant because I was able to contribute information that was part of the scientific discovery of of AMKD, you know. So I think I'm part of history, I guess you could call it that, you know. So uh so the long and short of it when I learned about the genetic link, um it gave me a valuable explanation for the disease that has seemingly struck out of nowhere because I was clueless of the genetic history of this and why me. Now I understand, you know, how it all derived.

LaVarne Burton: How did it feel to finally have an answer that this is this is how I got from this disease to where I am, that there's a there's a reason for it? How did that feel to be able to grasp that there was a specific reason?

Alonzo Mourning: It felt absolutely amazing, you know, because I knew that it wasn't my fault. You know I knew it was if everybody, when you're going through something medically challenged, you always say, What did I do wrong? What was it me? You know, but it wasn't me, you know. It was uh something way beyond my control.

LaVarne Burton: Do you recommend genetic testing for others who have a kidney disease and don't know the cause?

Alonzo Mourning: Well, first of all, I I encourage everyone to be proactive with their health. Number one. And I recommend everyone that has any signs and symptoms of kidney disease, swelling, lethargy, feeling extremely tired, whatever it is, you know, I recommend that you go to your doctor and find out what. What's best for you? Learning the genetic cause of a condition was empowering for me. It truly was. It provided a clear answer as to why kidney disease developed despite being a in peak physical health. It reinforced that knowledge is power. Discussing and being transparent and understanding the genetic component, kind of help uh communicating, help communicating it all with my family and doctors. All of that stuff was important. So to answer your question, I recommend that people ask their doctor what would be best for them. That's what I recommend. So just like I did, just like I had a conversation with my doctor, find a doctor that you trust, do that. And then uh somebody that's knowledgeable of the space of genetic testing of AMKD, find somebody that's aware of that and ask them if you should get genetically tested.

LaVarne Burton: And you've been doing a lot through your Power Forward campaign in partnership with Vertex Pharmaceuticals to really make sure that people know about APOL1 mediated kidney disease. Tell us about that partnership.

Alonzo Mourning: I think Vertex, they are um one of the leaders in the pharmaceutical space as it pertains to changing the narrative. And uh I'm grateful for the partnership because I like the fact that they want to help people. You know, and it's around it's along the lines of of what I'm all about. You know, changing the lives of people, helping people, you know, and that's how I was taught from my coaches and my foster mom and my teachers and what have you. Power Forward Together is something that an informational tool, a website that they help people develop through my thoughts and experiences, you know, and through my testimonies, you know, to to educate people as much as they can as a reference point where people can kind of go to and get information that they need in order to help navigate through this this tumultuous life of kidney disease.

LaVarne Burton: When we think of the challenges of kidney disease, AMKD in particular, what do you wish that people what what what was one thing that you'd like to leave that you wish people knew more about or understood better?

Alonzo Mourning: That it's not your fault.

LaVarne Burton: So important.

Alonzo Mourning: Yeah, yeah. Like, you know, I want them to understand that it's not your fault, and it don't get down on yourself that, you know, obviously there's scientists and technology is advancing, you know, and to help people like me and you deal with kidney disease a little bit better. You know. So here I am 22 years later, but I had a life-saving transplant, you know. But helping them also understand that it's um it's important that they communicate to their doctor and they take charge of their health. Um don't look in the mirror and say, why me? Because first of all, it's there's people out there that that have it a whole lot worse than you do, regardless of what you're dealing with. So it could be worse. And then outside of that, there's something that you can do. So being proactive with your health, being an active participant in your own health. You know, I had a a friend of mine tell me a story. He said he got invited to a trip. They went white water rafting. It was the first time he had ever done it. And he said he was scared to death because he's not a great swimmer. They told him that you everybody has to wear a life jacket. The the instructor was telling him, like, hey, when you get out on that water, there's a strong possibility you're gonna fall off that raft. And the instructor said, Don't panic. You're gonna be underwater for about 10, 15 seconds, just hold your breath, and then when you resurface, look around and see where the boat is and swim like hell to the boat. Because we can't come back and get you. So at that moment, you have to be an active participant in the boat, you have to be an active participant in your own life, in your own health, you know. So this is no different. This is no different, you know. You know, instead of looking around, you know, pointing for somebody else to do it for you. No, you gotta do it yourself. You gotta start educating yourself, you gotta find the right doctors, communicating with doctors, you gotta do all these things. Go to powerforwardtogether.com and help you with communicate better with doctors. You know, it's an informational tool, all these things. You know, do the things that you need to do to help yourself overcome and not succumb to this obstacle.

LaVarne Burton: That's a tremendous answer. It's it don't blame yourself, it's not your fault, but there are things you can do, partnerships with Power Forward, with the American Kidney Fund, with other organizations to learn everything that you can and to do those things that you can do. Don't just stand there and blame yourself. I love that answer. And that analogy was really on point. I truly am inspired whenever I talk with you and I hear not only your story about kidney disease, but your story about how you're giving back to help others. It really is just it's so motivating for the work that we do at the American Kidney Fund. So thank you so much for everything that you do, and particularly the work that you're now doing to raise awareness about AMKD. We really appreciate it.

Alonzo Mourning: It's my pleasure, LaVarne. My pleasure.

LaVarne Burton: I also want to thank Vertex Pharmaceuticals for supporting this episode of the Kidney Collective.

Tamara Ruggiero: To find out more about the topics we discussed in this episode, or to access resources to learn more about kidney disease, go to the episode show notes on your podcast listening platform, or go to kidneyfund.org/podcast. And if you haven't already, be sure to subscribe or follow the kidney collective wherever you listen to podcasts, and leave us a like or review to help us reach more members of the kidney community.

Mike Spigler: You can also follow AKF on all major social media platforms, including Facebook, Instagram, TikTok, Blue Sky, LinkedIn, YouTube, Twitter X, or whatever comes next. Join us next time. Remember that even in the toughest moments, there's hope ahead, and the Kidney Collective and AKF are here for you now.