This organization was not launched from a boardroom. It was not seeded by a pharmaceutical grant. It was built in a living room in Ellenton, Florida — by two people who had run out of patience with a system that kept asking care partners to give everything while offering nothing in return.
The Cold Ischemia Foundation did not begin with a strategic plan or a seed round or a ribbon cutting. It began the way most important things begin — with exhaustion, with anger, and with the quiet refusal to accept that this was simply how things were.
Jeff Parke had spent decades inside the American healthcare machine — first as a clinical research professional navigating the mechanics of how medicine gets tested and deployed, then as something far more personal: a care partner. The person who shows up. The person who stays. The person who reorganizes their entire life around someone else's survival and discovers, usually too late, that the system built around that survival was never designed to acknowledge their existence.
Marie Parke understood this from the other side of the same table. Living with kidney disease means learning to navigate a healthcare system that is extraordinarily good at treating the organ and extraordinarily indifferent to the human being attached to it — and to the other human being whose life is restructured entirely to support that treatment. Together, they saw the same failure from two angles. Neither angle was comfortable. Both were clarifying.
"Cold ischemia" is the medical term for the window of time between when a donor organ is removed from its source and when it is restored to circulation in a recipient's body. It is the period of maximum vulnerability. It is the window where everything can be lost.
The Name Behind the MissionThat is the name they chose for this organization — deliberately, precisely — because care partners live inside that window every single day. The cold ischemia of caregiving is the sustained state of doing critical work for which the system provides no training, no compensation, no recognition, and no path back to the person you were before you started. It is the invisible labor period. It is where most care partners are lost.
What Jeff and Marie experienced was not bad luck or an unusual circumstance. It was the predictable, documented, and entirely preventable outcome of a system that was designed — in policy, in regulation, in funding, and in institutional practice — to extract care partner labor without acknowledging it.
The transplant system specifically — the OPTN-governed network of transplant centers, organ procurement organizations, and oversight bodies — legally requires a designated care partner for a patient to be listed for transplant. No care partner means no listing. No listing means no organ. The system has made the care partner a medical prerequisite. It has then provided that care partner with no standardized training, no federal compensation, no employment protection, no mental health support, and no seat at any governance table that sets the rules they live under.
The GAO documented failures across transplant system oversight.[4] Senate Finance Committee investigations revealed gaps in HRSA accountability.[5] OIG reports identified systemic deficiencies in ESRD facility compliance monitoring.[6] The data was there. The documentation was there. What was missing was an organization willing to use it — without corporate constraint, without pharmaceutical partnership, without the conflict of interest that renders most patient advocacy organizations structurally incapable of confronting the institutions that fund them.
The Cold Ischemia Foundation was built with no external funding. No pharmaceutical sponsor, no hospital system partnership, no foundation grant attached to an institution with its own interests in how the story gets told. This was an intentional choice — and it was the hardest one.
What Jeff brought to the foundation was not just personal experience but professional depth: years inside clinical research operations, regulatory frameworks, patient recruitment infrastructure, and the architecture of how medical knowledge is produced, validated, and deployed. He had seen, from the inside, how institutions shape narratives. How funding determines which questions get asked and which do not. How the language of patient-centricity gets deployed by organizations that have never once asked a care partner to sit at their table.
That knowledge did not make the work easier. It made the obligation to do it impossible to avoid.
The tools were built because care partners needed them — not because a committee approved them, not because a sponsor funded them, not because a hospital system endorsed them. They were built because two people in Ellenton, Florida looked at the landscape and decided that waiting for the system to fix itself was a strategy for watching people fail.
Jeff Parke · Cold Ischemia FoundationThe platform that emerged — the AI-powered tools, the federal complaint generators, the backup care systems, the publications, the policy monitors — was not designed by committee. It was designed by a care partner who had needed every one of these tools and found that none of them existed. Every feature on this platform is the answer to a question that the healthcare system never bothered to ask.
Marie Parke · Co-Founder · Cold Ischemia Foundation
Marie Parke is not a background figure in this story. She is its center of gravity. Every publication, every tool, every policy brief, every congressional contact, every act of advocacy that this foundation has produced exists because of what it means to love someone through serious illness — and because of what it means to watch a system treat that love as a resource to be extracted rather than a sacrifice to be honored.
Marie's experience with kidney disease is not recounted here in clinical detail because this is not a story about symptoms or procedures. It is a story about what it costs to be the person who stays — day after day, appointment after appointment, crisis after crisis — inside a system that was designed for patients and not for the people holding them together.
The Cold Ischemia Foundation was named for a medical window of vulnerability. But it was built for a human one — the sustained, invisible, uncompensated state of being indispensable to someone's survival while being invisible to every institution responsible for supporting that survival.
This foundation is, in every meaningful way, a tribute to Marie — and to the 53 million Americans whose names no database records, whose labor no paycheck reflects, and whose sacrifice no monument has ever acknowledged.
The Cold Ischemia Foundation accepts no funding, gifts, grants, sponsorships, donations, or compensation of any kind from pharmaceutical companies, medical device manufacturers, dialysis corporations, transplant centers, hospital systems, organ procurement organizations, or any entity with a financial interest in the policies this foundation exists to challenge.
This is not a preference. It is not a current policy subject to future revision. It is a permanent, structural commitment to the only constituency this foundation serves: care partners and patients who have already paid enough.
The patient advocacy landscape in the United States is overwhelmingly funded by the same industries whose practices it is supposed to hold accountable. The National Kidney Foundation, the American Kidney Fund, and the majority of disease-specific advocacy organizations receive significant pharmaceutical and dialysis industry funding.[7] Cold Ischemia does not. It never will. And it will say so plainly — in every footer, on every page, in every document — for as long as it operates.
If this platform is useful to you, it is because no one paid us to make it anything other than useful to you. That is the only business model that has ever made sense for an organization that exists to expose the failures of institutions that have money and power. We have neither. We have something better. We have no reason to protect anyone but you.