The Time for Silence is Over

COLD
ISCHEMIA
FOUNDATION

For the 53 Million Who Hold Everything Together

Care Partner Intelligence  ·  Advocacy  ·  Accountability

Join the Movement See the Evidence
53M
Unpaid caregivers in America
$470B
Value of unpaid care annually
0
Federal laws protecting transplant caregivers
1
Movement determined to change it

What is Cold Ischemia?

In transplant medicine, cold ischemia time is the critical window when an organ, removed from its donor and deprived of blood flow, begins to deteriorate. Every moment counts. Delay means damage. Neglect means death.

We chose this name because it captures what happens to care partners in the transplant system. From the moment they take on the caregiving role, they are cut off from support, recognition, and resources. Like that organ on ice, they begin to deteriorate — financially, emotionally, physically, spiritually. And the system that depends on them looks away.

Cold Ischemia Foundation is not just a medical term. It is a diagnosis of a broken system — and the name of the movement that will fix it.

The People Behind the Mission

Who We Are

Built by a care partner — not a committee, not a corporation.

Jeff Parke

Founder & Executive Director

Jeff Parke

"Silence protects the system. I don't."

Jeff Parke is a care partner, patient advocate, and investigative writer based in Ellenton, Florida. After navigating the transplant system firsthand, he founded Cold Ischemia Foundation to do what no institution would: tell the truth about what care partners sacrifice — and build the political infrastructure to force change.

His work spans investigative journalism, federal regulatory analysis, and direct legislative advocacy — targeting CMS, HRSA, OPTN, and the structural failures that leave 53 million unpaid caregivers without protection.

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Jeff and Marie

The Story Behind the Foundation

Jeff & Marie

Marie is the reason Cold Ischemia exists. Her journey through the kidney transplant system — and the invisible labor Jeff carried alongside her — exposed every structural failure this foundation now fights to dismantle.

Their story is not unique. It is the story of 53 million Americans who hold the healthcare system together from the outside — without recognition, without compensation, and without a voice in the policies that govern their lives. Cold Ischemia Foundation gives that voice a platform, and a plan.

The Data They Don't Want You to See

The Crisis is Documented

Peer-reviewed research confirms what care partners have known for decades. This isn't opinion. It's evidence.

53%
of transplant caregivers report clinical depression or anxiety
Bevans et al., 2016
$470B
economic value of unpaid care annually in the U.S.
AARP, 2023
36%
of caregivers provide care with zero additional support
NAC/AARP, 2020
61%
of caregivers also employed — many forced to cut hours or quit
NAC/AARP, 2020

The Multi-Dimensional Burden

Financial Devastation78%
significant out-of-pocket costs not covered by any insurance
Social Isolation72%
significant loss of friendships and social connections
Identity Erosion68%
lost sense of self outside the caregiving role
Career & Income Loss63%
reduced hours, taken leave, or left jobs entirely
Mental Health Crisis53%
meet clinical thresholds for depression, anxiety, or both
Physical Health Decline45%
worsening personal health since becoming a caregiver

Our Core Principles

What distinguishes us from every other advocacy organization in this space.

🔥

Grassroots Power

No corporate sponsors. No pharmaceutical money. No institutional gatekeepers. Our power comes from care partners themselves.

📊

Evidence-Based Advocacy

We use peer-reviewed research, economic analyses, and systematic data to prove what care partners have always known.

⚖

Legislative Focus

Awareness isn't enough. We demand enforceable federal protections and accountability mechanisms with real consequences.

🚫

Independence from Industry

Pharma, transplant centers, and insurers have vested interests. We accept no funding that could compromise our advocacy.

🌎

Intersectional Justice

Caregiving burdens fall disproportionately on women, people of color, and low-income families. We center those most exploited.

🤝

Collective Action

Individual care partners are easily dismissed. Thousands of organized voices cannot be ignored. We build power through solidarity.

Voices of the Unseen

Real stories from care partners in the transplant system

"I quit my job, depleted my savings, and developed anxiety disorder. The transplant team never once asked how I was doing. I was just expected to perform."
M
Maria T.
Kidney transplant care partner, 7 years — Phoenix, AZ
What We're Fighting For

Our Demands

These aren't wishes. They're requirements. Policy changes that must happen to end care partner exploitation.

01
Medicare Coverage for Caregiver Support Services
Amend Medicare Part B to cover caregiver training, respite care, mental health services, and care coordination for transplant care partners.
02
UNOS Policy Requiring Caregiver Support Standards
Mandate that all transplant centers receiving UNOS certification must provide standardized caregiver assessment, training, and ongoing support.
03
Federal Paid Family and Medical Leave
Pass comprehensive paid family leave legislation that explicitly includes transplant caregiving with job protection and wage replacement.
04
NIH Caregiver Research Funding Mandate
Require NIH to allocate a minimum of 10% of transplant-related research funding to caregiver outcomes and burden reduction studies.
05
Caregiver Representation in Transplant Governance
Mandate care partner representation on UNOS Board, OPO boards, CMS transplant advisory committees, and transplant center councils.

The System Won't Change Itself

Every care partner who stands up and says "enough" builds the power we need to force change. Connect with us on LinkedIn to receive updates, advocacy resources, and ways to take action.

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