Why we exist. Who pays for the voice?

Good morning, everyone. This is Jeff Parke, as I have introduced myself many times, and hopefully the name starts to sound familiar. I am the founder of the Cold Ischemia Foundation. I wanted to make this video to ensure that we all understand why we exist and to send this personal message directly from me. So if you're watching this, kidney disease has probably walked into your life

or into the life of someone you love. Maybe you're on dialysis. Maybe you're waiting for the call that just has not come. Maybe you're the care partner, the one driving, scheduling, filling the pillbox and holding the whole family together. You see, I want to start with what nobody said to me: that I do see you. I truly, deeply,

transparently see you. I'm a patient myself. I've shared my journey. I've dealt with the system for almost three decades. I know what the chair is like. I know how the waiting goes. I've waited to have my third transplant for 10 years. I know what it feels like to be handed a pamphlet when what you needed was an answer.

Just an answer. A conversation with a social worker or the transplant coordinator. Something you didn't receive. And I know the moment you realize that nobody's coming to explain it. And like myself, you are left to figure everything out yourself. This is exactly why I wanted to start this foundation, and that is why

I decided to make this audio video. So just let me introduce you quickly, very properly. This is the Cold Ischemia Foundation. The background: in medicine, cold ischemia is the time an organ can survive once it's been cut off from what keeps it alive. And we took that name for a reason. We get a lot of questions as to why we did take that route.

We have watched the same thing happen to people. Cut off from the answers, cut off from respect, cut off from any real say in their own care, slowly going cold as they become, to simply feel obsolete, very unimportant, and

absolutely have no control over what happens to them and their care. Our whole job of the Cold Ischemia Foundation is to end that cold... interval. Apologies. And here's what that looks like. We have built many free tools you can use tonight: a living donor assessment, for example, a state-by-state directory of transplant centers with direct phone numbers,

guides written for care partners. We build the guides and the mentors who have been where you are, and we build the confidence to understand your own body, your own numbers, and your own choices. Because you do have choices. If you remember one sentence from this video, remember that one: you have choices.

So why this particular video, and why now? Because every week someone newly diagnosed types "kidney disease" into a search bar and it lands on a page that feels caring and independent. And too often, that page is paid for by the companies that profit from what happens next. I'm not calling anyone a villain. I'm telling you that you deserve to know who is paying for the voice that is talking to you.

Nobody else is going to say it, and so I've made a point. I made it a mission to make sure that I will be the one saying this, and saying it loudly. Let's just start with the size of kidney disease. 37 million Americans have kidney disease, and the CDC says 87% of the adults who have it

do not know. Think about that. They don't know. Most people find out when it's already a crisis. That's what happened to me. You kind of crash into dialysis. And when it is a crisis, there are two companies, simply two companies, that you're usually almost always stuck to choose. DaVita and Fresenius treat roughly three in four dialysis patients

in this country. DaVita alone brought in $13.6 billion last year. In 2024, it paid more than $34 million to settle federal kickback allegations without admitting any liability. Those are allegations. The revenue is not. Meanwhile, only about one patient in seven dialyzes at home. A 2025 analysis of 72 studies found that seeing a kidney specialist early cut catheter starts by more than half.

That's early, before the crisis. That is what prevention looks like, and it does not bill by the treatment. Now here comes the part some people just won't like. In 2017, researchers in the New England Journal of Medicine looked at the hundred and four largest patient advocacy organizations in America. And 83% took money from drug, device, or biotech companies.

Only, only one of the hundred and four said plainly that it did not. Chew on that, please. Kidney care is no different. The American Kidney Fund has been reported to draw roughly 80% of its donor base from DaVita and Fresenius. It denies steering patients, and the Justice Department declined to join the whistleblower suit.

The National Kidney Foundation's corporate membership lists Boehringer Ingelheim, Novo Nordisk, and Vertex. The American Association of Kidney Patients lists DaVita, Fresenius, and Amgen. Dialysis Patient Citizens was founded with an educational grant from DaVita. Now, none of that is illegal. Taking industry money is legal and common, and some of these groups do real work. I'm not telling you what to think about any of them. I'm telling you to look at the table

in this video. Now look at us, the Cold Ischemia Foundation. No donations, no funding, gifts, grants, or sponsorships from drugmakers, device makers, dialysis companies, insurers, hospital systems, or any advocacy group they fund. We charge fees only for services you ask for, at posted rates, and a fee never buys influence. No drugmaker, dialysis company, insurer, or hospital system has a seat

on our up-and-coming board. Ask any organization five questions. Who pays you? Who governs you? Who shapes your message? What can't you say? And who do you answer to? Our answers are simple. Patients and care partners. That's all. And because we have no sponsor to protect, we can name every institution. Independence is not a slogan.

It is a structure, and structure builds things. Free toolkits with no paywall, a weekly investigation called the Inside Files, a public scorecard of how Congress acts on transplant and kidney care, formal demand letters to the agencies that run this system. And what is really happening: in 2024, 3,743 people were removed

from the kidney waiting list because they died. 29% of the kidneys recovered that year were never transplanted. Those are not numbers. Those are people. These are real people who died, gave their lives to a system that has betrayed them and let them down, and we will continue to keep saying this very loudly.

People, we know, we understand, if you're listening and you're part of an advocacy organization, we get it. You're just going to say, "I'm making accusations that we're just doing this to create a rift, trying to tear apart whatever bridges that you may think we have been creating. But that's your opinion. But the facts don't lie. And we have the facts, and we share them. So here's what I'm asking. Don't take my word for it. Not mine, not theirs. Read their Form 990s. Find their sponsor page. Read the board list.

Ask what they have ever said against the people who fund them. We built a free Advocacy Assessment that walks you through it. Then come with us. Use the tools. Send this to a care partner who is exhausted tonight. Volunteer. Tell us where the system has failed you, because your experience is evidence. We need people to start using their voices. We get it.

We fear retaliation. It happens. Patients get blacklisted. We understand it. But if we can just continue to try and build a unified front, maybe we can get through to people. And we started this foundation because we were tired of waiting for somebody else to do it. We're not asking for permission. We're building it in the open, with nobody

to protect but you, folks. You have choices. And always know you have choices, and you're never alone. Think about it. Share this. Check us out. Just sign up for our free information, and you will see where we are different. And we are what the future looks like for true patient-centered care.

Thank you.