COLD ISCHEMIA
Foundation
For the 55 Million Who Hold Everything Together
The Long March for Care
This Was Built For You
THEY SAID
THANK YOU.
THAT WAS IT.

You were thanked. You were told you were essential. You were told you were doing God's work. And then the system handed you a schedule, walked away, and never called you again. This platform exists because that is not good enough. And we have the tools to prove it.

Care Partners Demand Recognition Healthcare Is a Human Right Honor Our Advocates Not a Checklist. Not a Score. A Real Response. The Long March for Care Zero Pharmaceutical Funding Built by a Recipient. Inspired by the Care Partner Who Saved His Life. Care Partners Demand Recognition Healthcare Is a Human Right Honor Our Advocates Not a Checklist. Not a Score. A Real Response. The Long March for Care Zero Pharmaceutical Funding Built by a Recipient. Inspired by the Care Partner Who Saved His Life.
A Letter to Every Care Partner Reading This

You already know
something is wrong.

You did not come to this page because everything is fine. You came because something happened — a discharge threat, a denial letter, an institution that looked you in the eye and treated you like you were not there — and every resource you found handed you a quiz. A PDF. A ten-question checklist that ended with a score and a suggestion to "seek professional support."

That is not support. That is the system protecting itself from you by making you feel like the problem is inside you, not inside the institution that is failing you.

We are done with that approach. Cold Ischemia Foundation does not hand you a wellness score. We hand you the federal law, the complaint letter, the direct line to the agency that is legally required to respond — and we built every one of those tools because a care partner in this situation does not have time for a score. They have a deadline.

Jeff Parke — Founder, Cold Ischemia Foundation
Jeff Parke · Founder · Three-Time Kidney Transplant Recipient
Who Built This

I was the patient
in the chair.

Three kidney transplants. I have been on the receiving end of every failure mode this platform documents. I have sat in the dialysis chair. I have waited for the transplant call. I have navigated the institutional indifference, the discharge threats, the systems designed to ensure that people in our position never figure out what rights they actually have.

I also spent decades as a clinical research professional — inside the machine, understanding how it produces knowledge, protects itself, and decides what care partners are and are not allowed to know. That combination — patient experience plus systems expertise — is why this platform exists and why nothing else like it does.

"I did not build this because I read a policy report. I built it because I lived every page of that report — and watched Marie carry the weight the system never once offered to share."
Jeff Parke · Executive Director · Three-Time Kidney Transplant Recipient
The Long March for Care
CARE PARTNERS
ARE MARCHING.
They held signs in the rain for you. This platform gives you the tools to hold something sharper — the federal law they hoped you would never find.
What We Are Not

Every other platform
gave you a score.

You have seen them. You have taken the burnout quiz. You have rated your stress from one to ten. You have received the PDF titled "10 Ways to Practice Self-Care as a Caregiver." And you have thought — maybe you even said it out loud — this is not what I need right now.

You were right. That content was not built for you. It was built to protect the organization publishing it. A wellness quiz creates the appearance of support while generating zero accountability for the institution causing the harm. It keeps you busy and calm while the discharge clock runs out.

Cold Ischemia Foundation does not weaponize checklists. We do not give you a self-assessment score that pathologizes your response to an institution that is genuinely harming you. We treat your response as rational — because it is — and we give you the tools that match its urgency.

What they gave you
A stress scale. A breathing exercise. A tip sheet. Content designed by a committee whose first question was not "what does this care partner need" but "what protects us from liability if they do not get better."
No complaint filed. No rights invoked. No record created.
What we give you
The exact CFR citation the facility violated. The direct phone number for your ESRD Network. The AI-generated complaint letter — pre-formatted, pre-cited, ready to file before the deadline the institution is counting on you to miss.
✓ Federal record created. Clock starts. Institution on notice.
What they called it
Patient-centered. Holistic. Empowering. Supportive. Language engineered to make you feel seen while delivering nothing that changes the power dynamic between you and the institution that controls your loved one's care.
No leverage created. Same power imbalance. Nothing changed.
What we call it
Grassroots advocacy infrastructure. Real tools that create real federal records that real agencies are legally required to act on. Support that ends with something filed — not something felt.
✓ Leverage created. Power shifts. Institution has a problem now.
WE TAKE NO PHARMA MONEY.
WE NAME THE INSTITUTIONS.
WE CLOSE THE LOOP.

Every platform that takes pharmaceutical money can publish the wellness content. Only Cold Ischemia Foundation can name the institutions causing the harm — because no one is paying us to stay quiet.

Marie Parke — Co-Founder, Cold Ischemia Foundation
Marie Parke · Co-Founder · The Care Partner Who Inspired This Platform
The Care Partner

She held everything together.
The system held nothing for her.

Through three of Jeff's kidney transplants, Marie was the prerequisite. The transplant system required her presence to put Jeff on the list. No care partner, no listing. No listing, no organ. The system made her medically essential — and then provided her with no training, no compensation, no protection, and no acknowledgment that she was anything more than a logistical requirement.

No one handed Marie a guide. No one told her she had rights. No one called to check if she was still standing. They handed her the discharge schedule and assumed she would figure out the rest.

"No one called me a care partner. No one told me I had rights. No one handed me a guide. They just handed me the schedule — and expected me to figure out the rest alone."
Marie Parke · Co-Founder · Care Partner
Donate Life
Organ Donation Depends on This

Every organ that saves a life
was delivered by a care partner.

Jeff received three donated kidneys. Marie made each transplant possible by meeting the legal care partner requirement — without a single dollar of federal support. The Donate Life movement asks people to give the most generous gift imaginable. Cold Ischemia Foundation exists to ensure that the people who receive that gift — and the care partners who carry them through recovery — are never abandoned by the system that asked everything of them.

The Ask

You have been doing this
alone long enough.

The dialysis center counting on your ignorance of 42 CFR §494.70. The transplant committee that removed your loved one from the list without invoking the due process they were legally required to offer. The insurance company that denied the claim and counted on the 180-day appeal window expiring before you figured out how to respond.

They are counting on your isolation. They have always counted on your isolation. The entire structure of the problem — the $600 billion in unpaid labor, the zero federal compensation, the 4% complaint filing rate — depends on care partners not knowing what they are owed, not knowing how to ask for it, and not having a platform designed specifically to give them both.

Cold Ischemia Foundation was built to end that. Not with a checklist. Not with a breathing exercise. With AI-powered complaint generators, federal escalation pathways, a Congress Scorecard that names every legislator who voted against you, and an Accountability Atlas that puts the direct phone number for every agency that can help you in your hands — right now.

For $15 a month. Less than the cost of one hour of the professional advice the system has been counting on you never being able to afford.

The system is not going to fix itself. The institutions profiting from care partner invisibility are not going to dismantle the structure that profits them. The pharmaceutical companies funding the platforms that gave you the wellness quiz are not going to fund the platform that names them. That platform has to be funded by you.
This is what makes us different. This is what makes us necessary.
STOP
DOING THIS ALONE.

Join America's only independent care partner advocacy platform. No wellness quiz. No self-assessment score. Just the tools, the law, and the people who built this because they lived it.

Join the Foundation — $15/mo → Support with a donation
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