The Call That Changed Everything: Jenn’s Journey to Creating Kidney Contenders

Jenn’s story begins with a single phone call the kind that changes everything. When she learned her mother was in kidney failure, she was suddenly thrown into a medical world she didn’t understand. Overnight, she had to learn new terminology, navigate complex systems and communicate with clinicians who didn’t always listen. What started as a daughter trying to advocate for her mother became a journey that reshaped her life.

In this episode of Kali Kat Tap Talks, Jenn shares how stepping into the healthcare system opened her eyes to the gaps in communication, the weight of clinician egos and the emotional toll families face when they’re unprepared. She talks about the moment she realized she had to “learn their language” just to be heard and how that experience changed the way she approached every medical conversation that followed.

As she supported her mother, Jenn also discovered her own rare autoimmune disease. Instead of slowing her down, it deepened her empathy and fueled her purpose. She began working directly with kidney patients and families, witnessing firsthand how many people were blindsided by kidney failure and how often early signs were missed or misunderstood. Through these experiences, she saw the urgent need for education, advocacy and support long before crisis hits.

That’s how Kidney Contenders was born from lived experience, compassion and the determination to make sure no one else walks this path alone. Jenn built the organization to empower families with knowledge, help them navigate the healthcare system and give them the tools she wishes she had from the beginning.

In this episode, Jenn opens up about:

• The phone call that changed her life
• What it’s like to advocate for a loved one in a system that doesn’t always listen
• Learning to communicate with clinicians and navigate medical egos
• Discovering her own autoimmune disease
• The early signs of kidney issues families often miss
• Why she created Kidney Contenders and the impact she hopes to make
• How education and awareness can save lives long before a diagnosis

This conversation is honest, emotional and deeply human. It’s a reminder that behind every medical chart is a family trying to understand, a patient trying to survive and a system that doesn’t always make room for either. Jenn’s story is about resilience, advocacy and turning pain into purpose.

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🔗 About Kidney Contenders

Kidney Contenders is a nonprofit focused on kidney health education, early detection, and empowering families with the knowledge Jenn wishes she had from

Transcript

SPEAKER_00 0:00

So that's really where it started. It started because satellite healthcare really wanted to initiate the National Kidney Foundation's Austin walk. And apparently it hadn't been initiated in a while. And a lot of different vendors had pulled out of it. So satellite healthcare was kind of like reintroducing it to the Austin community. And so it just kind of sparked an interest in me to see what other outreach could be done, but not through National Kidney Foundation. And that kind of essentially began the birth of kidney contenders.

SPEAKER_01 0:38

Okay. So what skill did you have to teach yourself from scratch to build a mission-driven platform?

SPEAKER_00 0:47

I've just always been one of those people who wants to learn as much as possible, but I would rather be a jack of all trades than a master of anything particular. So I knew that I understood how to decipher medical terminology. And that came from all of the months and now going on, years I spent working in healthcare. And so what I did was while I was working for satellite, even when I first started in 2009, anytime they offered free training courses on anything related to clinical care, I was the first one to register myself. I had to make sure, of course, that it was universal. It wasn't specific to a clinician, but I would register myself. I would do whatever I had to do. There were certain centers that accommodated dialysis patients. And a lot of the nephrologists that worked at the dialysis clinic, they also worked at these access centers. And so anytime they were offering free educational courses, I took them. So I went into this with that type of initiative. And then also my background that I don't normally talk about this, but I'm actually a graduate of Fiorella LaGuardia High School for Music Art and Performing Arts. And so I studied visual arts at a college level during that time. And so I was introduced to a more high-level atmosphere when it came to visual arts and how to project them and how to kind of gravitate people towards them. And so I used that education that I had in addition to the education I was receiving at that time from the different centers that I was kind of interacting with, and then sometimes occasionally having to deliver, say, certain things to the hospital. So a lot of times at dialysis centers, if a patient, if a patient of your center ends up in the hospital, well, in some cases, they might need something that the dialysis center is able to give to the hospital for that patient. And I can't go into specifics, but it does require somebody to deliver it. And so I occasionally would have that ability to go and deliver it. And if I had enough time, I could then speak to a nurse about something related to the patient, not about the patient, him or herself, but about what type of treatment they were receiving and why. And I just made myself open to new information. And so I sat down. I then decided, you know what? If I really want to understand how to help people, I need to speak to some of the patients. And there was a patient, Susie Reed, who at the time wanted more done for the dialysis community in general. She wanted more education out there. She wanted people to understand that not everybody on dialysis was indigent, that a lot of them were working, but it's a little hard to work when you have to sit in a chair for sometimes five hours, three to four times a week, depending on what your need is for your kidney-related issue. And so she wanted that information out there. And she didn't feel that the media was interested because it wasn't, for lack of a better term, sexy. It wasn't something that people wanted to think about. Nobody wants to see a diseased kidney. Nobody wants to hear about people's problems like that. They just want the fun and the glitz and the glam. And it's not about that. And so I said, okay, you know what? We're going to start kidney contenders because we are contending for all of the patients, the potential patients, and just people in general who are facing life-threatening illnesses, diseases, and just really want to know as much as they can about their overall health and how they can help each other. And maybe there's something we can do about it.

SPEAKER_01 4:45

Yeah. So what was one of the most emotional challenging parts of build not just building um something rooted in real patients? You know, you know what I'm trying to say? Um when you're getting involved with the patient and you're getting emotionally involved, um I don't even know how to say this, but how do you what was your mental um state of mind? Because a lot of it is it it's it's driving you towards your your mother's situation, that's where you're at uh today. But what was your emotional state of mind? Is it normal or does it just I mean, how do you balance that? I guess.

SPEAKER_00 5:30

I think because my mother physically lived in a different state and also was self-reliant, I didn't stress about her situation as much. And also we had conversations from the time I first talked to her about when she told me she was going on dialysis to 2011. So my mother would end up um dying, uh her her death date was uh December uh 2013. I think it was December 23rd or December 22nd, 2013. So as you can see, my mother didn't live so many years after. But to go back to your question, if your objective is to help people and you're healthy yourself, then your objective is just to try to help that person. And so you don't think about anything else, you look at what the future can stand for. And mind you, kidney contenders has never, ever made any monetary profit from its existence. The only time we collected money was when we helped the National Kidney Foundation with their Austin walks. And we only did that twice. Um, but the thing is, uh it wasn't about money, it wasn't about trying to become a nonprofit ourselves. It was about trying to understand, okay, what are there any preventative measures that can be taken so people don't end up on dialysis? How about that? Is that being explained enough? Do people understand any of this? That's what was going through my head. You see, I mean, I I'm from New York City, I've met all types of people. Um, you know, I mean, I have literally seen almost everything you can imagine. So nothing really shocks me. Occasionally I learned something like in 2009 when my mother said I'm going on dialysis, and I was like, what the heck is that? That's it surprised me, but does it stop me and make me, you know, cry or make me confused? No, because I've seen almost everything. I was raised a little differently. And so I was taught at an early age what life really is. Now, I will say that when you do see a patient who is suffering and you see physical signs of trauma from not just the sites where the needle is put in to do the dialysis treatment, but sometimes, depending on what other health conditions they have, you know, you don't know sometimes what can cause the body to bruise. So when you see certain physical ailments, it can make you sad, especially if you happen to have a good relationship, a good rapport with that patient. But the focus is always on, okay, how can I really help this person? Put aside the monetary value, put aside that for a second. What other education is out there that can help them? And what I learned is that a lot of them wanted to understand about clinical trial studies. But you notice, though, how what they wanted, the first thing out of their minds wasn't, okay, can you pay my bills for me? Because I'm tired of working and being on dialysis. That wasn't the first thing out of their mind. It was, what about these clinical trials? We don't feel like we learn enough information about them. I heard a clinical trial is a stepway to getting your kidney function fully back. It was stuff like that that wasn't being promoted during the National Kidney Foundation's walk. You know, it they're transactional because that's their event and that's what it's meant to be. But the patients wanted more than that. And that was the emotional part of it that I understood that they didn't want to be thought of as transactional. They wanted to be understood as we want resolution, not a temporary band-aid.

SPEAKER_01 9:48

Wow. So can they get some type of resolution from the kidney contenders? Because you have, I looked at your site, it's a it's a really nice site.

SPEAKER_00 9:59

I think that the clinical trials so that there is a clinical trials link on there that lists every clinical trials that is going on in the entire world. But it's such a great question that you ask, Callie, because you have to be sponsored for clinical trials. It costs money. I mean, I I'm obviously I'm, you know, not saying anything that doesn't seem illogical, but it costs money to fly to another country for treatment that could resolve your specific illness that is affecting your kidney failure. But you have to have money and you have to be sponsored. So, Clinical Trials EU, they are they exist in Europe, yes, but they cover all the clinical trials that are active throughout the world. And their mission is they want to help get sponsorship for patients that qualify for the clinical trials. And the reason why Kidney Contenders has a non-monetary partnership is that we want to make sure that anyone who visits our site knows about them, knows about the clinical trials. If a patient or anyone is interested and they contact the clinical trials EU, that administrative system for the clinical trials EU will ask them certain questions and then will get their information to see if there's available sponsorship. Now, that's one part of our site. The other part is more educational. There are things like preventative care first thinking puzzles that my staff and I, well, I say my staff, but it's really myself and two other people that create every single day to get people to think about what's the difference between preventative care versus emergency care. And what people tend to not understand is that if you're going for emergency care, that has nothing to do with preventative care. Your body's in a situation where it needs attention right away. Preventative care is a little bit different. It's the everyday, low, effective like effort stuff like making sure your blood pressure is red, knowing your blood glucose, different things like that, that we now have gadgets for. You want to talk about difference. We have gadgets in 2026 compared to 2011 that allow us to monitor our blood pressure, our blood glucose, know our steps, different things that people can take for take for granted. But if it's a preventative measure with hypertension, then yeah, that that's a that's a huge leaps and bounds. And kidney contenders make sure we follow the trend in that respect.

SPEAKER_01 13:00

So basically what you're saying, you highly recommend kidney contenders. People should go to kidney contenders and and and take a look at it and understand it and get educated, correct?

SPEAKER_00 13:11

Yes. And if there's a question, there is a contact us, and we contact people within 24 hours. It doesn't go to this person, that person, that person. It comes to the one volunteer we have that answers all of our emails. And if there's any questions that the volunteer can't answer, it goes to me and my partner to answer for them.

SPEAKER_01 13:35

All right. So what are the biggest gaps in the care for the people outside of healthcare, the world, that don't understand? What's one of the biggest gaps? I know that our system is kind of broken, but what's the biggest gap?

SPEAKER_00 13:48

Reinforcing learning through logic. Reinforcing learning through logic. That's the biggest gap because people think you work for an insurance company, well, why are your prices so high? Um, that's not my decision. Actually, there's a reason why the price is the way it is. That's trying to reinforce that learning through logic, but you have to have people listen first. One thing I will say, Callie, that I appreciate about your podcast, you're asking the right questions. Have you noticed that if you go on different social media sites, occasionally someone will read a headline? Um, this administration is now going to enforce these actions and these insurance companies are not going to make a certain amount of money. As soon as people read that headline, they think, oh, oh, that means that our healthcare is, we're going to be able to afford it, or does it mean it's going to be lowered? There's so many questions with these very generalized headlines. And a lot of times the stories with the headlines, they don't give you the full spectrum of what's going on. So you really want to speak to the people that work in the field that are not getting a transactional uh compensation for speaking the truth. You want people like myself, like kidney contenders, who, if you have a question, we're going to give you the answer. And if you need justification for our answer, we're going to give you the correct source that gives you the factual information. And right now, healthcare is a very convoluted topic. You know, we I know I'm not saying anything you haven't heard, all the GoFundMe's that are populating specifically for celebrities. But did you happen to catch a lot of the comments that are coming? Like people saying, well, why should we support this GoFundMe for so-and-so celebrity? They made all their money or they have access to wealth. Why should their health or, you know, why should they receive money just because they didn't take care of their health or comments like that? And see, that's where it gets convoluted. It we have to understand that you don't have to support anything you don't want to support. But if you want people's health care to be better, then you have to understand that there is an entire process flow for that. And it's very, very long. Okay. So, for example, myself, I will tell something to your listeners that nobody else knows about. I have a rare autoimmune disease known as Pemphagus vulgaris. Now, when you look at me, you can't tell because I was one of the few people where it affects just a certain area inside of my body. But the amount of treatment that I had to endure, the misdiagnosis I had to endure, oh wow, was that a big wake-up call? And then, of course, the co-payments and then the bill itself. So if anybody understands what it's like to be put through a physical and psychological and financial unstable certainty, I do. And I can tell you that you can't lash out at the physician, you can't lash out at the insurance company, and you can't lash out at your congressional representative or your senator on a health committee or the executive branch. There's a process in place. The process has to be reviewed from beginning to end. So that's why when there are surveys that go out to people and it says, what is your opinion about your health care? What would you like to see change? This is that reinforced learning through logic model. You have to know what you're talking about to get people to listen and start implementing a change. The more voices that come together, the more people will listen. What you really want is you want the media to take an interest in your situation, but not embellish on it, speak facts about it.

SPEAKER_01 18:10

Yeah, and that's a very true statement that you said. So if healthcare leaders were listening right now, what would you want them to truly hear?

SPEAKER_00 18:24

I'd like for them to stop perpetuating false rhetoric and putting blame on one particular institution or sector for people not having the type of health care that they would ultimately like, which is affordable health care, access to the providers, the physicians or allied health professionals like chiropractors, for example, with I would like for them to just reinforce that there are certain processes that have to be reviewed carefully and changed in order for people to get that ideal health care that they like. I am I would like for those healthcare leaders who are potentially listening to reinforce the fact, not salaciousness.

SPEAKER_02 19:16

Yeah, yes.

SPEAKER_01 19:18

If someone is listening right now, they feel lost, but knows that they are meant to build something meaningful, what would you tell them?

SPEAKER_00 19:33

You have to come together with your thoughts. It's not something that those are not words that people always say out loud. But before you implement change, you have to understand what it is you want to change. And I don't recommend, even in this day and age, just creating a TikTok video talking about what you'd like to do, especially if you really don't know what you want to do, but you want to you want to build something that's going to be impactful to multiple people. Well, you have to have the right sources to do that. You need to know who you can reach out to. And if you do have an idea and you think you're ready to execute that idea, then make sure you can answer any question, whether it's positive or negative, that's going to be thrown at you. Because there's always going to be a critic and there's always going to be a cheerleader. And you just have to know how to deal with both of them.

SPEAKER_01 20:37

Okay. So what legacy do you hope kidney contenders leaves in the healthcare space?

SPEAKER_00 20:43

One thing that I think a lot of people don't realize is that we are, even though we are not a nonprofit and we are not a for-profit, we are an organization that is a registered trademark. And one of the trademarks that we tried unsuccessfully to get through was a resolution for kidney disease. And so that's the if we can have any legacy tied to kidney contenders, if we can't actually rectify a cure for kidney disease, then we at least want to be remembered for the education that we put out there. And that reinforcing learning through logic using our puzzle models, if anything can be remembered about us, it was how many steps we took to try to get people to reinforce their learning through logic.

SPEAKER_02 21:40

Very powerful. Very powerful.

SPEAKER_01 21:42

So how do how do people like the audience, you know, um find kidney contenders?

SPEAKER_00 21:50

Well, it it can be a mouthful, but if you if you go into um, you know, whether you're using Bang or Google search and you just In kidney contenders. Um, if you just put the word in kidney, you're gonna have a whole bunch of different information come up. But you put in kidney contenders and we'll be the first site that comes up. And the easiest email is Jen at kidney contenders.com. And if you send me an email, as long as there's no malware attached, I will respond.

SPEAKER_01 22:26

And finally, Jen, what does turning silence into purpose truly mean to you?

SPEAKER_02 22:36

I I'm not really sure how to answer that one.

SPEAKER_00 22:40

Turning that would be something I would have to think about. Turning silence into purpose. Um because, see, in my head right now, I'm thinking, I don't know if silence is the best method. I wonder if it's true that that you know saying of, you know, the squeaky wheel gets the oil, it's it's difficult to say, for example, this is gonna take it a little uh the answer a little differently, but when you send out letters to congressional representatives, to senators, to the president of the United States, and you explain who you are, you explain what your purpose is and how you think you're helping a country or the world, and you're met with silence. And then you're not out there knocking down doors, trying to be noticed by legacy media. Sometimes when you're not being provocative, you don't always think that you're making a difference in somebody else's life, that your website, for example, is making a difference in somebody else's life, that nobody responding to, say, you know, when you're requesting feedback on maybe turning your site into an app or getting feedback on the puzzles that you're making a difference, it can be very, you know, it can be very daunting and it can make you think, wow, why am I doing this? But if I started this in 2011 and the year's 2026, then that motivation it's been met with certain victories. You know, there's been certain victories that I've seen, maybe with how certain communication now is developing in the kidney health world. Maybe there are different vendors that are interested in adapting that money comes later, let's educate correctly. And you know that there's certain language that's being used that, say, kinny contenders developed that wasn't initially used in certain outreach messages by even larger platforms. And so that type of understanding makes you feel, okay, I'm doing something right. I probably won't see the reward. But you know what? Did I really start this to get acknowledgement? Or did I start this to really make a difference and just let people know who we are? But they don't have to say our name for us to feel validated.

SPEAKER_01 25:20

All right, this is Cali Cat Tap Talks, and we're gonna tap out, but remember go check out Jen's site, which is called Kidney Contenders. And thank you. And thank you, Jen, for being on the show today.

SPEAKER_00 25:40

Thank you, Cali.