Dr. Carson's extraordinary career as a pioneering pediatric neurosurgeon, former U.S. Secretary of Housing and Urban Development, and recipient of the Presidential Medal of Freedom has inspired millions.

This year's gala is expected to welcome nearly 1,700 attendees in support of independent medicine, patient choice, and two outstanding Oklahoma charities:

Bethany Children's Health Center
Major Ed: Empower the Veterans Foundation

As Co-Director of Communications with Rarchar Tortorelllo for this year's gala, we are honored to help share the story of an event dedicated to improving the lives of Oklahoma children, veterans, and families.

We look forward to seeing everyone in Norman on August 8!

This morning, in a Senate hearing room in Washington, Dr. Anthony Fauci sat before the Homeland Security and Governmental Affairs Committee and said almost nothing.

He was subpoenaed. He appeared. He delivered an opening statement blaming the chairman's years of prosecution threats for what was about to happen. And then, on the advice of his attorneys, h…

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This week, the podcast welcomes Dr. Mehmet Oz, and it’s a conversation I hope people across the political and healthcare spectrum will take the time to hear.

A special thank you to @Brinda Adhikari for voicing something that has been on my heart for years—the gray area between living with chronic illness and being considered “fully disabled.” So many individuals and families, including my own, live in that space every single day. It’s a conversation we desperately need to have.

It has been an honor to join this podcast as a guest on multiple occasions, and I look forward to welcoming Dr. Oz back in the future. I’m also hopeful we’ll see Secretary Robert F. Kennedy Jr. join the conversation soon.

As someone working in patient advocacy, I’ve found much that I agree with in Dr. Oz’s perspective and in this administration’s intentions. At the same time, I have a growing list of thoughtful questions and concerns that I hope continue to be explored through open, respectful dialogue. That’s how trust is built.

Great job to the entire Why Should I Trust You? team.

My ask: Please watch, share, and discuss this episode. Whether you agree or disagree, these are exactly the kinds of conversations we need more of.

Watch the episode here⁠

Find it on your favorite podcast platform LINK HERE>>>. Why Should I Trust You? Podcast

https://www.whyshoulditrustyou.net

Bold, unfiltered, and uncompromisingly honest, Why Should I Trust You?  is a weekly podcast that looks at the breakdown in trust for science and public health. It drops every Thursday, with occasional additional special episodes sprinkled in. Hosted by Brinda Adhikari, the former executive producer of “The Problem with Jon Stewart” and a former TV news journalist; Tom Johnson, the former executive producer of “The Circus,” and also a former TV news journalist; Dr. Maggie Bartlett, a virologist and assistant research professor at Johns Hopkins Bloomberg School of Public Health; and Dr. Mark Abdelmalek a skin cancer surgeon, a medical journalist and a dermatologist practicing in Philadelphia -  each week we try to figure out what is behind this staggering collapse in trust and see if we can rebuild towards trust again. 

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I didn’t arrive here through politics.

I arrived through a hospital room. Through a binder full of records no mother should have to carry. Through a decade of knowing something was deeply wrong with my children and not yet having the words to prove it.

My son was not diagnosed with cystic fibrosis until he was 14 years old. My daughter was nearly 11.

For years before those diagnoses, I sat beside them in examination rooms. I fought insurance companies. I researched treatments late into the night. I learned medical terminology I never expected to know. I became, by necessity, a nurse, a pharmacist, a care coordinator, a therapist, an insurance specialist, and sometimes the only voice in the room willing to ask the question nobody else wanted to ask.

Like so many parents of children with chronic illness, I became more than a mother.

I became an advocate.

My children’s diagnoses explain part of our family’s story — but not all of it.

As the years went on, both of them accumulated additional diagnoses beyond cystic fibrosis itself. And if I’m honest, so have I. So has my mother. Three generations. Different lives, different experiences, different diagnoses — and yet all of us, in our own ways, have spent significant portions of our lives navigating chronic health challenges.

That pattern stayed with me.

Everywhere I looked, people were managing not one health condition but many. Children, parents, and grandparents carrying increasingly complex health burdens. The question I couldn’t shake was never just why do my children have cystic fibrosis. The question became: why are so many of us developing multiple chronic conditions at once?

What role do genetics play? What role does environment play — nutrition, stress, access, affordability, the thousand invisible factors that shape whether a family thrives or struggles? Where are we succeeding as a healthcare system? Where are we falling short?

These are not partisan questions.

They are human questions.

When I first encountered the MAHA movement, something resonated.

Not because I was looking for a political tribe. Not because I agreed with every position I came across.

But because someone was finally asking questions I had been living with for years.

Why are so many American families struggling with chronic illness? Why are healthcare costs rising while health outcomes often seem to move in the wrong direction? Why are patients and caregivers so often excluded from conversations that directly affect their lives?

For me, MAHA was never about choosing sides.

It was about being willing to examine — honestly, and without flinching — the food systems, environmental exposures, research priorities, and healthcare access gaps that shape the health of families like mine. It was about believing that we can do better while still respecting science, evidence, and the lived experience of patients.

Most of all, it was about hope.

Hope that we can prevent disease where prevention is possible. Hope that we can support families more effectively. Hope that we can build systems worthy of the trust we ask people to place in them. The goal is to ultimately Make America Healthy Again. Who would against that?

When I say I am a MAHA Mom, I am not speaking only for myself.

I am thinking about the mothers sitting beside hospital beds tonight.

The mothers caring for children with rare diseases.

The mothers fighting insurance denials.

The mothers reading ingredient labels in grocery store aisles.

The mothers growing gardens.

The mothers researching late into the night.

The mothers who have spent years advocating for their children because nobody else would.

Every MAHA Mom has a story. And no two stories are exactly alike.

That is why I want to hear yours.

Why are you a MAHA Mom? What brought you here? What experiences shaped your perspective, and what changes do you want to see for the next generation?

Share your story in the comments below.

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If you’d like to write something longer, I’m now accepting guest submissions from MAHA Moms and caregivers across the country — pieces about chronic illness, food, caregiving, prevention, healthcare reform, disability, or simply the desire to leave a healthier world for our children. Selected submissions will be published here so that more voices can be heard.

To submit, email jacqueline.c@healthrevolutionusa.org with “MAHA Mom Submission” in the subject line.

Every movement begins with a story.

And every mother has one worth telling.

Jacqueline Capriotti is a MAHA mom, writer, and lifelong health advocate whose work sits at the intersection of chronic illness, public health, and patient-centered reform. She is the co-founder of Childhood Pancreatitis Foundation, and a former New Jersey Chapter Board Member of the Cystic Fibrosis Foundation. Jacqueline also serves on the Patient and Family Advisory Council at the Hospital of the University of Pennsylvania, bringing lived experience directly into institutional improvement.

She is the founder of the Victory Garden Alliance and Health Revolution USA, initiatives dedicated to rebuilding community health, strengthening food systems, and restoring trust between patients, providers, and public institutions. As the mother of two young adults with cystic fibrosis, Jacqueline has spent more than 20 years navigating complex medical landscapes, advocating for clinical trial innovation, and fighting for the dignity, safety, and informed consent of families like hers.

Through her writing and national advocacy, Jacqueline gives voice to patients, caregivers, and communities too often overlooked in policy discussions. Her mission is simple and urgent: to ensure that America becomes a place where families do not have to outlive their children — and where health, truth, and humanity guide the future of medicine.

Thanks for reading Health Revolution USA! This post is public so feel free to share it.

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This week, I had the privilege of speaking at the American Public Health Association’s Policy Action Institute in Washington, D.C., alongside Brinda Adhikari, Tom Johnson, and Dr. Maggie Bartlett of the podcast Why Should I Trust You? — a show I’ve been honored to join as a guest on multiple occasions.

The title of that podcast felt especially fitting for the conversations that unfolded throughout the week.

Why should I trust you?

Why should patients trust researchers?

Why should researchers trust policymakers?

Why should the public trust institutions?

And perhaps most importantly — how do we rebuild trust once it has been lost?

I was grateful for the opportunity to share my perspective as a patient advocate, caregiver, MAHA supporter, and public health stakeholder. But what left the greatest impression on me was not what happened on stage.

It was the conversations that happened afterward.

The Conversations After the Stage

Over the course of the event, I met students, fellows, doctoral candidates, early-career researchers, and public health professionals from across the country. Many shared their hopes for the future. Many shared their work.

And many shared their concerns.

For some, research funding had already been cut. For others, projects had been paused or delayed. Some wondered whether the career path they had spent years preparing for would still exist in the same way a few years from now.

I am grateful they trusted me enough to share those concerns.

I listened.

And I left thinking.

Behind every grant, every study, and every budget line, there are human beings dedicating their lives to understanding disease and helping people they may never meet.

Because while we often discuss funding decisions in political terms, the reality is far more human than that.

I saw bright minds. I saw passion. I saw commitment.

And yes — I saw fear.

The truth is, I share some of that fear.

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What Research Funding Means at My Kitchen Table

As the mother of two children with cystic fibrosis, I understand what research funding means at a deeply personal level. The advances that transformed my children’s lives did not happen by accident. They happened because researchers were funded, questions were asked, trials were conducted, and discoveries were made.

When I hear conversations about cuts to research funding, I would be dishonest if I said I wasn’t concerned about what that could mean for the future — not only for my own children, but for countless families living with rare diseases.

In many ways, however, fear is not a new feeling for those of us in the rare disease community.

We have lived with uncertainty for a long time.

We know what it feels like to wonder whether our disease area will receive attention.

We know what it feels like to compete for limited resources.

We know what it feels like to be told there simply isn’t enough funding.

Regardless of which administration is in power or who controls the purse strings, rare disease families often find themselves fighting to ensure their loved ones are not forgotten.

That reality has shaped generations of patient advocates.

It has taught us persistence. It has taught us how to build coalitions. It has taught us how to tell our stories.

And perhaps most importantly, it has taught us that progress requires partnership.

As a rare disease parent, I have also learned something many people outside this world may not realize: rare disease communities often depend on research funded through broader categories and larger scientific initiatives. Discoveries that ultimately help rare disease patients frequently emerge from research that was never designed with our specific condition in mind.

When you represent a population of approximately 40,000 people in the United States, you quickly learn that numbers alone do not determine need.

Our community is small. But our lives matter. Our children matter. Our future matters.

Every family facing a rare disease deserves the same hope, urgency, and commitment that any larger patient population would expect.

So when I listened to the concerns of young researchers this week, I did not hear strangers describing a problem I couldn’t understand.

I heard echoes of conversations rare disease families have been having for decades.

Different circumstances. Different perspectives.

But a shared concern about the future — and a shared hope that the work we care about will continue.

The Questions MAHA Is Right to Ask

At the same time, I understand the argument that some of our priorities may need to be reexamined.

As a patient, caregiver, and public health advocate, I can also see the value in investing more heavily in the fundamentals that affect millions of Americans every day:

Primary care. Emergency care. Nutrition. Prevention. Affordability. Access. Mental health. Maternal and infant health. And the growing burden of chronic disease.

If we are honest with ourselves, our current system is not producing the outcomes many of us hoped it would.

The United States spends more on healthcare than any nation in the world. Yet we continue to struggle with rising rates of chronic illness among children and adults. We struggle with obesity. We struggle with mental health challenges, suicide, and substance abuse. We struggle with maternal and infant health outcomes. We struggle with affordability and access.

These challenges did not emerge overnight. They are not the fault of any one researcher, institution, administration, or political party. They developed over decades.

Which means fixing them will likely take decades as well.

This is where I believe the MAHA movement has tapped into something real. At its best, MAHA is asking questions that many Americans are asking:

Why are we so sick?

Why are chronic diseases increasing?

Why are families struggling despite unprecedented spending?

How do we improve health outcomes — not just healthcare spending?

These are legitimate questions.

But asking those questions should not require us to dismiss the value of science, research, or public health. Nor should defending science require us to dismiss the concerns of patients and families who feel the system is not serving them as well as it should.

The answer cannot be patients versus researchers. It cannot be public health versus MAHA. It has to be all of us. Together.

The Difficult Questions We Should Welcome

If change is needed, restructuring a system this large will not happen overnight.

It will take time. It will take patience. It will take humility.

And it will require researchers, clinicians, patients, families, public health leaders, policymakers, industry, and communities to participate in shaping what comes next.

I also believe we should be willing to ask difficult questions.

Do inefficiencies exist? Has duplication occurred? Have incentives sometimes become misaligned? Have political, institutional, or outside influences shaped funding priorities in ways that deserve examination?

If so, how do we improve them?

Those questions should not be viewed as attacks.

Science itself depends on questioning assumptions. Public health depends on continuous improvement. Trust depends on transparency. And progress depends on our willingness to examine what is working — and what is not.

Progress also depends on our willingness to recognize success when it happens.

In a political environment where nearly every achievement is viewed through a partisan lens, I hope we can learn to celebrate wins wherever they come from.

If research leads to a breakthrough, we should celebrate it.

If a public health initiative improves outcomes, we should acknowledge it.

If a policy expands access, improves affordability, or strengthens prevention, we should support it.

If a reform increases transparency, accountability, or public trust, we should recognize that progress as well.

Too often, we reserve praise for those we already agree with and criticism for those we do not.

But healthier communities are built when we are willing to recognize what is working — regardless of who proposed it, funded it, implemented it, or receives credit for it.

Patients do not care which political party helped advance a treatment. Families do not care which administration funded a breakthrough. What matters is that lives are improved.

What matters is that suffering is reduced.

What matters is that people are healthier because of it.

Most importantly, I hope we do not approach this moment as competing interests fighting over limited resources.

Instead, I hope we ask a different question:

How do we build a research and public health ecosystem that continues to support innovation, protects rare disease communities, advances scientific discovery — and at the same time addresses the foundational health challenges affecting millions of Americans?

That is not a question any one group can answer alone.

But it is a question we must answer together.

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A Thank-You Note

To the young researchers I met this week in Washington: thank you.

Thank you for sharing your stories.

Thank you for sharing your concerns.

Thank you for choosing a path dedicated to inquiry, discovery, and service.

Thank you to APHA and Why Should I Trust You? Podcast.

And thank you for reminding me that behind every study, every proposal, every data set, and every funding request is a human being who wants to make the world better.

I left Washington with empathy for your uncertainty.

But I also left with hope.

Perhaps this moment is not simply about funding. Perhaps it is about rebuilding trust.

Because if we are willing to listen to one another, ask difficult questions, and work together toward measurable improvements in health outcomes, then perhaps, together, we can build a healthier future than either side could create alone.

If this resonated with you, please share it with a researcher, a patient advocate, or anyone who believes our health system can do better. And if you haven’t yet, subscribe to Health Revolution USA for more conversations at the intersection of lived experience and health policy.

For our family, that moment arrived like a door closing behind us. On one side was everything we had built over years: the relationships with physicians, the carefully maintained records, the hard-won understanding of a disease that does not forgive carelessness. On the other side was a new system — one that had its own language, its own logic, and its own definition of who deserved what.

My son has cystic fibrosis. So does my daughter. I have two children living with this disease, which means I have spent the better part of two decades learning, in the most intimate possible way, what it costs — medically, financially, emotionally — to keep people alive when their bodies are working against them. My daughter has, so far, been able to manage her care without government assistance — a fact I am grateful for every single day. But cystic fibrosis is not a disease that makes promises. It does not offer guarantees or timelines. The ground beneath any CF patient can shift without warning, and I am aware, always, that what is true today may not be true tomorrow. The system we are discussing is not an abstraction for her either. It is a door she may one day need to walk through. My son’s complexities run particularly deep, and the clinical terms have never fully captured what it means to live inside his body. By the time he turned eighteen, he had already undergone a total pancreatectomy with auto-islet transplantation — a surgery performed to address the destruction CF had done to his pancreas, a surgery that left him a brittle Type 1 diabetic for the rest of his life. His lung function was declining. He carries the weight of severe medical PTSD, the kind that accumulates slowly in a person who has spent too many years in too many hospital rooms. He is, by any reasonable measure, someone for whom these safety net programs were designed.

On paper, it was clear. In reality, it was anything but.

What I had imagined — naively, I now understand — was a continuation. A handoff. A system that would look at the record of his life and say: yes, of course. What I got instead was a process that felt less like a gateway to care and more like an obstacle course designed by someone who had never needed to run it themselves.

We submitted documentation. Extensive documentation. Miles of it, if you laid the pages end to end. Physician testimony. Specialist reports. Surgical records. The kind of medical history that tells, in exhaustive clinical detail, the story of a young man whose body has been fighting since childhood.

We were denied.

We appealed. We gathered more. We were sent to a state-appointed physician. Then a state-appointed psychologist. Both of them, to their credit, looked at the evidence before them and expressed something close to confusion — not confusion that we had applied, but confusion that we had not already been approved.

And still, we waited. Eleven months in total.

What finally moved the needle was not the surgery. It was not the diagnoses, or the years of specialist care, or the documented evidence of a body under constant siege. What tipped the scale was a letter — a handwritten testimony from his homeschool teacher, submitted through his high school, describing in human terms what his daily life actually looked like over the previous three years.

I sat with that for a long time. A long time.

Not because I was ungrateful for the letter — I was, and remain, deeply grateful. But because I could not stop asking myself: why was this the piece that mattered? Why, in a system designed to evaluate medical need, did the human account of a teacher carry more weight than the documented account of a surgeon?

And then — because the story does not end with approval — we discovered that approval and access are not the same thing.

My son’s care team is at the Hospital of the University of Pennsylvania in Philadelphia. We live in New Jersey. This is not an unusual arrangement for families managing complex, rare diseases. You go where the expertise is. You build relationships with teams who understand not just your condition, but its intersections — in his case, both cystic fibrosis and the particular complexity of post-transplant care.

His Medicaid, once granted, would not cross the state line.

He was approved. He simply could not use it for the care that kept him alive.

We were fortunate — and I use that word with full awareness of how much weight it carries — that he also held private insurance through his father’s employer. Without it, I do not know what we would have done. I don’t like sitting with that sentence, but it is true, and I think the truth of it matters.

Today his coverage has shifted again. He now has Medicare through his father’s SSDI, which has opened doors that Medicaid had not. But even now, I find myself living in a low-grade state of uncertainty. Does he still qualify for Medicaid as a secondary? Is he eligible for food assistance? I ask. I research. I call the offices that are supposed to have answers.

I get different answers every time.

This is where I want to be precise, because I think precision matters here.

We are hearing a great deal right now about fraud in healthcare — in Medicaid, in Medicare, in the programs that make up this country’s patchwork safety net. And I want to be clear: I believe it exists. I believe it is serious. I believe it causes real harm — not just to taxpayers in the abstract, but to families like mine, because every dollar that flows somewhere it should not is a dollar that was supposed to build the floor beneath the most vulnerable among us.

These programs are not abstractions to our family. They are the difference between stability and collapse. Between access and absence.

So yes. Fraud matters. It should be rooted out wherever it lives.

But there is something else I have come to understand, something that rarely gets named clearly in these conversations: complexity does not just deter fraud. It can hide it. And at the very same time, it can wall out the people the system was designed to serve.

I have spoken with families who spent money they could not afford on lawyers just to secure benefits they were already eligible for. I have also heard, over and over, about people who know how to “work the system” — who understand the forms, the terminology, the right phone numbers to call, the exact language that opens doors. And the uncomfortable truth is that navigating the system legitimately sometimes requires the same sophistication as gaming it illegitimately.

That is not a political observation. It is a design failure.

A system that can be exploited by those with knowledge and blocked for those without it is not a secure system. It is an arbitrary one.

And here is what I need people to understand — people who have perhaps never had to use Medicaid, who may think of it as simply another government program running in the background of other people’s lives: it is not a good healthcare program. I say that not to be ungrateful, and not to be cruel, but because it is the truth and the truth matters. Finding physicians who accept it is difficult. Finding specialists who accept it is harder. Finding world-class specialists who accept it — the kind my son and daughter both require to manage diseases as complex and unforgiving as cystic fibrosis — is, in many cases, close to impossible. The reimbursement rates are low, which means the providers willing to work within those rates are often limited, and the facilities equipped to handle rare, multi-system disease are often the ones least likely to be in-network. This is the reality on the ground, not the reality on the brochure.

Every fraudulent recipient — every person gaming eligibility they do not have, every provider billing for services never rendered, every dollar siphoned through a system that was never designed with enough safeguards to catch it — takes something real from someone like my children. Not in theory. In practice. The billions that leak out of these programs annually do not disappear into abstraction; they drain directly from the pool of resources that could be used to improve reimbursement rates, expand provider networks, fund care coordination for complex patients, and build a system worthy of the people depending on it. Fraud does not just cost money. It costs access. It costs quality. For some — for the most medically fragile among us — it costs years of life. We owe it to those people to be rigorous, to be honest, and to build something better: a system that is transparently easy to apply for and genuinely difficult to game.

There is a broader tension I cannot ignore, one playing out in real time as states and federal agencies — HHS, CMS — find themselves in conflict rather than collaboration. These are federally funded programs. Transparency and cooperation are not optional features. They are structural requirements. And when that cooperation frays — when there is resistance, when visibility is withheld, when the work of accountability becomes a political football — we lose something essential: the ability to actually solve the problem.

Fraud does not align itself with party affiliation. It does not live only in states of one color or another. It is opportunistic, and it will find the gaps wherever those gaps exist. Addressing it requires something that feels increasingly rare: the willingness to work together on something that matters, even across disagreement.

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I have thought about what I want from this system. Not as a policy expert, not as an advocate — though I am both of those things, in my way — but as a mother.

I want it to work. Honestly and efficiently and for the people it was built to serve.

I want the families who need it to be able to find it without needing a guide, a lawyer, or eleven months of their lives.

I want the fraud that exists within it to be found and stopped — not because I want to tear the system down, but because I want it to stand.

These two things are not in conflict. The instinct to treat them as opposites — to say that protecting access and eliminating misuse are somehow competing goals — is itself a kind of failure. They are connected. They always have been.

For families like mine, Medicaid is not a loophole. It is not a luxury. It is the floor — the thing that makes it possible to focus on keeping someone alive rather than on the financial architecture of keeping someone alive.

The goal is not to dismantle it, and it is not to defend it blindly. The goal is to make it work — clearly, fairly, and for the people who cannot wait for the rest of us to stop arguing long enough to fix it.

Jacqueline Capriotti is a MAHA mom, writer, and lifelong health advocate whose work sits at the intersection of chronic illness, public health, and patient-centered reform. She is the co-founder of Childhood Pancreatitis Foundation, and a former New Jersey Chapter Board Member of the Cystic Fibrosis Foundation. Jacqueline also serves on the Patient and Family Advisory Council at the Hospital of the University of Pennsylvania, bringing lived experience directly into institutional improvement.

She is the founder of the Victory Garden Alliance and Health Revolution USA, initiatives dedicated to rebuilding community health, strengthening food systems, and restoring trust between patients, providers, and public institutions. As the mother of two young adults with cystic fibrosis, Jacqueline has spent more than 20 years navigating complex medical landscapes, advocating for clinical trial innovation, and fighting for the dignity, safety, and informed consent of families like hers.

Through her writing and national advocacy, Jacqueline gives voice to patients, caregivers, and communities too often overlooked in policy discussions. Her mission is simple and urgent: to ensure that America becomes a place where families do not have to outlive their children — and where health, truth, and humanity guide the future of medicine.

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There is a phrase you learn very quickly inside children’s hospitals.

NPO.
Nothing by mouth.

It sounds clinical. Routine. Necessary.

And it is.

But for families like mine, it can mean something much bigger. It can mean days, weeks—sometimes months—where a child does not eat at all.

I lived this with both of my children.

My son, who has cystic fibrosis–related chronic pancreatitis, would experience acute attacks so severe that his body could not tolerate food. The only way to stabilize him was to let his pancreas rest completely.

That meant NPO.

No food. No water. Nothing by mouth.

Sometimes for weeks. Once, for nearly two months.

During that time, nutrition didn’t come from meals. It came through an IV.

Total Parenteral Nutrition—TPN.

It kept my son alive.

And I will always be grateful for that.

But it is not the same as nourishment.

“For the most vulnerable bodies, survival should not be the ceiling.”

When those periods extended, we transitioned to enteral feeding—nutrition delivered through a tube directly into the body.

For my son, this wasn’t temporary.

There were years where he lost the ability to eat by mouth entirely.

Years where a feeding pump ran 24 hours a day. A constant hum. A constant drip. A constant reminder that his body could no longer do what it was designed to do on its own.

And again—it kept him alive.

But when you sit beside that machine long enough, you begin to ask different questions.

Not just Is this working?
But Is this enough?

Is this optimal nutrition for a body already under extreme stress?

For a pancreas that was, quite literally, attacking itself?

These formulas are designed for survival. They are engineered to stabilize, to maintain weight, to keep a child going through crisis.

But they are also highly processed. Standardized. Built for tolerance and efficiency—not individualized healing.

And when you are watching your child live through that reality, you begin to see the gap.

In my son’s case—and for so many others—that first tray of food becomes something more than a meal. It becomes a test. If he can hold it down, if the labs look okay, we’re told he can go home. It becomes your ticket out of what we sometimes, half-jokingly and half-exhaustedly, call “Club Med.”

But I remember thinking—at his most vulnerable, when his digestive system was just beginning to recover—is this really the best test we have? Or just the fastest one?

And often, he didn’t pass that test.

He would get sick. Stay longer. Sometimes it would push him right back into an extended acute attack.

Was it the quality of the food itself that caused it? I can’t say that definitively. But as a mother watching it happen more than once, I also can’t say it helped.

“If food is medicine, then what we feed children in hospitals should reflect that—especially when they are fighting for their lives.”

There is another part of this story that stays with you long after discharge.

Because when food becomes associated with pain, restriction, tubes, pumps, and medical intervention—it changes something.

It doesn’t just go back to normal.

Today, as an adult, my son lives with Avoidant/Restrictive Food Intake Disorder (ARFID).

And this is not about blame.

It is about awareness.

Because we are not just feeding children in these moments.

We are shaping their relationship with food.
With nourishment.
With their own bodies.

And that is part of care whether we acknowledge it or not.

We are at a moment in this country where nutrition is finally entering the national conversation again. The U.S. Department of Health and Human Services and the Centers for Medicare & Medicaid Services have begun to push forward new conversations around hospital food, dietary standards, and what it means to truly support patient health.

Leadership from Robert F. Kennedy Jr. and Mehmet Oz has helped bring this issue into focus—highlighting farm-to-hospital partnerships and a shift away from ultra-processed foods in clinical settings.

This matters. It is a meaningful step. It signals that we are beginning to understand that food is not separate from care. But there is still a gap.

Because inside children’s hospitals—the place where the most vulnerable patients in this country are being treated—nutrition is still too often treated as secondary.

During the recent “Take Back Your Health” tour stop in Miami, leaders from the U.S. Department of Health and Human Services and the Centers for Medicare & Medicaid Services—including Robert F. Kennedy Jr. and Mehmet Oz—announced a meaningful shift in how we think about hospital nutrition. At Nicklaus Children’s Hospital, they highlighted a new farm-to-hospital partnership designed to bring fresh, locally sourced food directly to patients, alongside new federal guidance encouraging hospitals nationwide to align meals with dietary guidelines and reduce ultra-processed foods, added sugars, and refined ingredients.

It is a powerful acknowledgment that food is not separate from care—but part of it. And for the first time in a long time, it feels like the system is beginning to catch up to what so many families have known all along.

Click here to read more about this important step forward in hospital nutrition.

“No one is more vulnerable than a sick child—and that child has no say in what their body receives.”

And yet, we already have examples of what is possible that have been in play for some time now.

My children were patients at Children’s Specialized Hospital, part of the Robert Wood Johnson University Hospitalnetwork, where they participated in an inpatient chronic illness program that changed the way I understood care.

They were there for over a month.

And what stood out was not just the medicine—but the intention behind everything else.

There was a nutritionist working directly with the children.
Child life specialists weren’t just there to comfort—they were there to teach.

Children with complex conditions were learning how to read labels. How to understand what they were eating. How to make decisions about their own health.

They were taken out of the hospital and into a grocery store—guided, supported, and empowered to apply those lessons in the real world.

Parents were part of it too. We weren’t observers—we were participants.

And it didn’t stop at food.

There was movement.
Therapy.
Mindfulness.
Breathing.
Yoga.

This was not just treatment. This was preparation for life. And it worked.

When I talk about what’s possible, I’m not speaking in theory—I’ve seen it. Stories like this from Children's Specialized Hospital reflect a model of care that goes beyond treatment. Ariely’s journey shows what happens when we take the time to teach, support, and empower a child to understand their body, their nutrition, and their choices—not just in the hospital, but in life. Click here to read Ariely’s story →

“We don’t just need to treat illness—we need to teach people how to live beyond it.”

Across the country, other models are emerging as well.

This is exactly what it looks like when a hospital decides to take food seriously—not just as a service, but as part of care. At St. Luke's University Health Network, in partnership with the Rodale Institute, they’ve built something remarkable—a fully operational, certified organic farm directly connected to the hospital system. Sitting on 14 acres, this farm produces dozens of varieties of fruits and vegetables that are served to patients, staff, and the community, literally bridging the gap between soil health and human health.

Click here to see what “Food as Medicine” can look like in practice →

And then there is what Boston Medical Center has built—something that feels almost symbolic of where healthcare could go if we fully embraced this idea of Food as Medicine. Their rooftop farm, sitting several stories above the hospital, is not just a garden—it is a working farm growing more than 30 varieties of crops, producing thousands of pounds of fresh food each year that goes directly back into patient meals, their preventive food pantry, and even a teaching kitchen where families learn how to cook with what they receive.

What strikes me most is not just the farm itself, but how it is integrated into care. This isn’t a feel-good sustainability project. It is connected to real clinical programs—feeding patients during hospitalization, supporting families facing food insecurity, and teaching them how to carry those habits home.

There is something powerful about that image—food grown on the roof, harvested just steps away, and placed onto a patient’s tray or into a family’s hands. It closes the gap between where food comes from and how it heals. And it raises the question again—if this can be done in the middle of a dense urban hospital in Boston, why aren’t we doing this everywhere? You can learn more about Boston Medical Center’s rooftop farm here →

These are not ideas. They are working models. Which raises a simple question:

If we know how to do this—why isn’t it standard?

I am not speaking as a critic of children’s hospitals.

Some of the most extraordinary people I have ever met work inside them. My children are alive because of them.

But precisely because of that, I believe we can do more.

We can bring the same level of innovation we apply to treatments, surgeries, and therapies—and apply it to nutrition. Not as an afterthought. But as a core part of care. So to those leading this national conversation, I say this with respect:

Go further. Go deeper. And go where the need is greatest. Into our children’s hospitals.

“If we truly believe in Food as Medicine, then we must apply that belief where it matters most—
to our most precious cargo.”

Call to Action

If we are serious about changing the future of health in this country, we cannot stop at hospital reform alone.

We must build bridges beyond the hospital walls.

We need more outpatient programs that:

• teach children and families how to cook

• help them understand food in a real, practical way

• empower them to make better choices at home

• Host and sponsor farmers market events for your patients and communities

• sponsor a community garden and food pantry

• Partner with schools, school nurses and physicians

• and support long-term, sustainable health after discharge

We need programs that don’t just stabilize—but equip.

Programs that recognize that healing does not end when a child leaves the hospital.

It continues in kitchens. In grocery stores. At school. In gardens, At family tables.

And if we do this right—if we connect clinical care with real-life application—we don’t just improve outcomes.

We change lives.

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If this resonates with you, share this. Start the conversation. Tag a hospital, a program, a leader who is already doing this work—or who should be.

Because the solutions are here.

Now we need the will to scale them.

Jacqueline Capriotti is a MAHA mom, writer, and lifelong health advocate whose work sits at the intersection of chronic illness, public health, and patient-centered reform. She is the co-founder of Childhood Pancreatitis Foundation, and a former New Jersey Chapter Board Member of the Cystic Fibrosis Foundation. Jacqueline also serves on the Patient and Family Advisory Council at the Hospital of the University of Pennsylvania, bringing lived experience directly into institutional improvement.

She is the founder of the Victory Garden Alliance and Health Revolution USA, initiatives dedicated to rebuilding community health, strengthening food systems, and restoring trust between patients, providers, and public institutions. As the mother of two young adults with cystic fibrosis, Jacqueline has spent more than 20 years navigating complex medical landscapes, advocating for clinical trial innovation, and fighting for the dignity, safety, and informed consent of families like hers.

Through her writing and national advocacy, Jacqueline gives voice to patients, caregivers, and communities too often overlooked in policy discussions. Her mission is simple and urgent: to ensure that America becomes a place where families do not have to outlive their children — and where health, truth, and humanity guide the future of medicine.

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I am lactose intolerant and yes that’s me in this photo. So why am I sporting the milk mustache?

A glass of milk will make me violently ill. Always has. When I moved to the United States from England at eight years old, I faithfully drank the little carton of milk served with school lunch. Many afternoons ended in the nurse’s office, doubled over in pain. I didn’t understand why. I just knew milk hurt.

So this might surprise some people:

I still support making whole milk available to children in schools.

Not mandatory. Not exclusive. But available.

Here’s why.

My intolerance to milk is about lactose — not about dairy as a whole. I can eat cheese. I drink kefir. I eat full-fat Greek yogurt regularly. Fermented dairy works for me because the lactose is largely broken down. Milk, however, delivers a concentrated lactose load that my body simply cannot process.

That is a digestive enzyme issue. It is not a moral argument against milk.

And children are not little adults.

Whole milk — when tolerated — is one of the most metabolically balanced whole foods available. It contains protein, natural carbohydrate, and fat in a proportion that slows glucose absorption and provides sustained energy. The fat is not incidental; it is functional.

Children need fat for brain development, hormone production, and absorption of fat-soluble vitamins A, D, E, and K. Removing fat while fortifying milk with vitamin D makes little physiological sense. Fat is required for proper absorption of these life-sustaining nutrients.

We made a cultural shift decades ago by applying adult diet culture to childhood nutrition. In trying to prevent adult obesity, we reduced fat in school milk. But children are growing. Their brains are developing. Their endocrine systems are maturing. They require nutrient density and metabolic stability.

I know this not only as a mother — but as a caregiver of a child who underwent a total pancreatectomy with an auto-islet cell transplant due to cystic fibrosis-related pancreatitis.

For my son, whole milk is not indulgent. It is stabilizing.

The fat slows carbohydrate absorption. The protein supports a steady insulin response. The caloric density helps maintain weight — critical in cystic fibrosis. And fat supports absorption of the very vitamins children with pancreatic challenges struggle to absorb.

At the same time, we must acknowledge reality: many children today have food sensitivities. Lactose intolerance is real. Dairy allergy is real. Gut microbiome disruption is real.

The answer is not restriction. The answer is expansion.

Offer whole milk.
Offer lactose-free milk.
Offer plain full-fat yogurt or kefir.
Offer alternatives for those with allergies.

Real food. Real options. No ideology.

This is why I support broader initiatives encouraging whole-food literacy at the federal level. The renewed focus at HHS and USDA on real, minimally processed nutrition — including campaigns like Eat Real Food (eatrealfood.gov) — is an opportunity to re-center school lunch conversations around nutrient density rather than food politics.

Even culturally iconic campaigns like “Got Milk?” (gotmilk.com/campaigns) reflect how deeply dairy has been woven into American childhood. The question today is not whether milk should be mythologized or demonized. It’s whether we are applying metabolic intelligence to how we nourish children.

Often the argument against expanding whole-food options is cost. Whole milk, fermented dairy, higher-quality sourcing — these are sometimes labeled “more expensive.”

But aren’t our children worth it?

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School nutrition is not just a line item. It is foundational health architecture. The metabolic patterns we support in childhood shape insulin sensitivity, bone density, hormonal regulation, and immune resilience for decades.

We are not feeding children for today alone. We are building the adults they will become.

Investing in nutrient-dense food now produces healthier, more productive, more resilient adults later. The downstream savings in healthcare, chronic disease, and lost productivity dwarf short-term budget debates.

My body says no to milk.
My son’s body benefits from it.

Both truths can coexist.

If we are serious about improving children’s health, we must move beyond blanket bans and adult dietary projections. We must restore nutrient-dense foods while honoring individual tolerance.

That is not backward thinking.

That is metabolic literacy.

And if we truly believe in optimizing the next generation’s future, then we must be willing to nourish them accordingly — wisely, thoughtfully, and without fear.

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Jacqueline Capriotti is a strategist, writer, and lifelong health advocate whose work sits at the intersection of chronic illness, public health, and patient-centered reform. She is the co-founder of Doctors for America First and the Childhood Pancreatitis Foundation, and a former New Jersey Chapter Board Member of the Cystic Fibrosis Foundation. Jacqueline also serves on the Patient and Family Advisory Council at the Hospital of the University of Pennsylvania, bringing lived experience directly into institutional improvement.

She is the founder of the Victory Garden Alliance and Health Revolution USA, initiatives dedicated to rebuilding community health, strengthening food systems, and restoring trust between patients, providers, and public institutions. As the mother of two young adults with cystic fibrosis, Jacqueline has spent more than 15 years navigating complex medical landscapes, advocating for clinical trial innovation, and fighting for the dignity, safety, and informed consent of families like hers.

Through her writing and national advocacy, Jacqueline gives voice to patients, caregivers, and communities too often overlooked in policy discussions. Her mission is simple and urgent: to ensure that America becomes a place where families do not have to outlive their children — and where health, truth, and humanity guide the future of medicine.

When I read that newborn screening has been expanded to include Duchenne muscular dystrophy and metachromatic leukodystrophy, I felt relief rise — and then something heavier settle in behind it.

Relief for the families who will now be spared the long stretch of uncertainty.
Grief for those of us who arrived just before the system was ready to see our children clearly.

My son Jon was born in 1996.
My daughter Emily followed in 1999.

At the time, cystic fibrosis was not yet included in New Jersey’s newborn screening panel. New Jersey would not add CF until 2001, making it one of the last states in the country to do so — two years too late for Emily, and years too late for both of my children.

They were both diagnosed in 2010.

That means we spent more than a decade living inside unanswered questions.

For Jon, it took fourteen years to reach a diagnosis.
For Emily, eleven.

Those years were not quiet. They were not subtle. They were filled with signs that came and went, symptoms that flared and retreated, moments when something felt off — and moments when it felt undeniable. We watched concerns grow into limitations, and limitations harden into unmistakable disability, all while saying the same sentence again and again:

Something is wrong.

Still, the pieces did not come together.

Delay does not simply postpone treatment.
It reshapes childhood.
It rewrites family life.
It teaches parents to doubt themselves long before the system admits it missed something.

What Cystic Fibrosis Takes — and Why Time Matters

Cystic fibrosis is a genetic disease that affects how the body moves salt and water in and out of cells. When that process doesn’t work properly, mucus becomes thick and sticky instead of thin and protective.

Over time, that mucus damages the lungs, traps bacteria, fuels chronic infections, and interferes with digestion — preventing the body from absorbing the nutrients it needs to grow. CF affects multiple systems: lungs, pancreas, liver, digestive tract, and more.

CF is not one illness.
It is a cascade.

And damage begins early — long before many children are diagnosed.

When diagnosis comes late, families spend years chasing symptoms instead of understanding disease. They react instead of prepare. They survive instead of stabilize.

Early knowledge changes that arc. It gives families time — time to support nutrition before malnutrition takes hold, time to protect lungs before damage compounds, time to learn how to live with the disease rather than constantly running behind it.

We did not have that time.

The Faces Behind the Policy

I also think of Nicky.

Nicky was one of my son Jon’s closest friends. They met not on a playground or through school, but inside an inpatient chronic illness program — two young men learning how to live inside bodies that demanded far more from them than most people their age ever have to consider. RWJH Pediatric Chronic Illness Management Program

Jon was 20.
Nicky was 19.

What they eventually realized — almost by accident — was that their lives had crossed long before that hospital stay.

They grew up in the same town.
They went to the same high school.
They had played recreational sports together and against each other, often on opposing teams, long before illness began reshaping their paths.

As children, they both looked like they were on a typical trajectory — active, athletic, engaged in school and sports. Over time, illness quietly interrupted that rhythm.

Both spent periods on homebound instruction. Jon had spent much of his adolescence pulled from ordinary teenage life by serious health challenges. Nicky’s path looked more typical — at least at first.

Duchenne muscular dystrophy is a genetic neuromuscular disease that causes progressive muscle weakness. It usually appears in early childhood, often starting with difficulty running, climbing stairs, or getting up from the floor. Over time, muscles weaken throughout the body — including the heart and lungs — leading to loss of ambulation, respiratory failure, and shortened life expectancy.

Duchenne revealed itself slowly.
Then relentlessly.

After they were discharged from the hospital, Jon was at Nicky’s house almost immediately.

They played video games.
They watched movies.
They laughed.

Jon hosted hangouts with other friends, helped Nicky where he needed it, and did what came naturally — he showed up. He connected with someone who understood the weight of illness without explanation, someone who knew the unspoken fears and fatigue only too well.

There is a particular kind of relief that comes from being with someone who already knows.

Nicky eventually lost the ability to walk.
Then more of his body followed.
And in his early twenties, Nicky died.

Losing him was truly devastating for our son.

What stays with me is not only the cruelty of Duchenne, but the convergence of their lives — two young men who once ran the same fields, played the same games, and only truly met after illness narrowed their worlds.

Early diagnosis does not erase grief.
But it softens the chaos.
And sometimes, it spares families from learning everything the hardest way possible.

The Heel Prick — and the Promise It Carries

Newborn screening happens quietly, usually within the first day or two of life.

A heel is pricked.
A few drops of blood are collected.
A card is sent to a lab.

From that small sample, entire futures can shift.

Newborn screening in the United States began in the 1960s with a single disease: phenylketonuria (PKU) — a rare metabolic disorder. Without early detection, children with PKU develop severe intellectual disability. With early dietary intervention, they can live healthy lives.

That success changed everything.

It proved that early knowledge could prevent lifelong disability — and it became the foundation of modern newborn screening.

Over time, as science advanced, more conditions were added. What started as one test became dozens.

Today, most states screen for 30 or more conditions — genetic, metabolic, endocrine — all chosen because early detection can prevent irreversible harm.

And yet, what a baby is screened for still depends on where that baby is born.

There is a federal recommended list.
But states decide when — and whether — to adopt it.

That gap matters.

We lived inside it.

Do We Really Have to Wait Before We’re Allowed to Know?

This is the question that stays with me.

Historically, diseases are added to newborn screening when early detection clearly changes outcomes — often because a treatment exists. That caution is understandable.

But it also creates a quiet injustice.

If we only screen once a drug is available, we lose years — sometimes decades — of opportunity:

• to study disease progression earlier

• to develop better treatments sooner

• to slow progression instead of chasing it

• to support families as they plan for education, care, finances, and adulthood

Do we really have to wait for a cure before we’re allowed to know?

Families do not need perfect answers to need truth.
They need time.
They need preparation.
They need to be believed before damage defines the story.

Progress — and the Storm Ahead

The recent decision by HHS to add Duchenne muscular dystrophy and metachromatic leukodystrophy to newborn screening is a meaningful step forward. Link to HHS Press Release

It acknowledges that early detection matters — and that waiting until symptoms appear often means waiting too long.

But early detection is only the beginning.

A recent 60 Minutes investigation highlighted a growing crisis: some life-saving genetic therapies now cost millions of dollars per dose, with inconsistent insurance coverage and frequent denials.

Screening without access is not enough.
Knowledge without treatment is not justice.

A Call Forward

Our children are precious cargo.

They are not data points or policy debates.
They are our future.

Knowledge is the greatest form of prevention.

Prevention does not begin in adulthood.
It begins at birth — with what we choose to look for, what we choose to study, and how quickly we act once we see it.

The expansion of newborn screening shows what is possible.

Now the work is to carry that possibility forward — so fewer families live in limbo, fewer children lose ground to silence, and fewer parents are left to whisper the words that echo long after diagnosis arrives:

If only we had known sooner.

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Jacqueline Capriotti is a strategist, writer, and lifelong health advocate whose work sits at the intersection of chronic illness, public health, and patient-centered reform. She is the co-founder of Doctors for America First and the Childhood Pancreatitis Foundation, and a former New Jersey Chapter Board Member of the Cystic Fibrosis Foundation. Jacqueline also serves on the Patient and Family Advisory Council at the Hospital of the University of Pennsylvania, bringing lived experience directly into institutional improvement.

She is the founder of the Victory Garden Alliance and Health Revolution USA, initiatives dedicated to rebuilding community health, strengthening food systems, and restoring trust between patients, providers, and public institutions. As the mother of two young adults with cystic fibrosis, Jacqueline has spent more than 15 years navigating complex medical landscapes, advocating for clinical trial innovation, and fighting for the dignity, safety, and informed consent of families like hers.

Through her writing and national advocacy, Jacqueline gives voice to patients, caregivers, and communities too often overlooked in policy discussions. Her mission is simple and urgent: to ensure that America becomes a place where families do not have to outlive their children — and where health, truth, and humanity guide the future of medicine.

Editor’s Note

This essay is a reflection on the kind of medicine that remembers the human being at the center of care. It is written in gratitude—for the physicians, nurses, researchers, therapists, social workers, volunteers, and caregivers who choose courage, connection, and compassion even when systems make it difficult. It is also an invitation: to remember why healing has always been more than treatment, and why families matter in medicine.

Last night, with a box of tissues beside me, I met a hero I never knew by name—but whose life’s work once held my family together.

I watched Audrey’s Children, the biographical film about Dr. Audrey Evans, the first Chief of Oncology at Children’s Hospital of Philadelphia (CHOP). By the time the credits rolled, I realized something quietly extraordinary:
I had lived inside her legacy—years before I ever knew she existed.

My children were CHOP kids.
And years later, during the most critical chapter of my son’s life, my family quite literally lived at a Ronald McDonald House—months at a time—while he fought his way back from the edge.

Only now do I fully understand that none of that was accidental.

A Doctor Who Refused to Accept “That’s Just the Way It Is”

Dr. Audrey Evans was a pioneer in every sense of the word. As a physician and researcher, she helped create the drug-trial staging system for pediatric cancers, bringing clarity and shared language to a field that desperately needed it. That framework allowed doctors around the world to compare outcomes, refine treatments, and save lives faster.

But what struck me most was not only her scientific brilliance.
It was her moral courage.

Early in her career, Dr. Evans noticed something medicine at the time largely ignored: children were being treated—but families were unraveling.

Parents slept in cars.
Mothers slept on hospital floors.
Families were exhausted, displaced, and invisible.

Long before terms like Child Life, whole-child care, or family-centered medicine entered the professional lexicon, Dr. Evans understood a simple truth:

You cannot heal a child while breaking the family.

She didn’t just name the problem. She challenged the system—openly, persistently, and at real personal risk.

Courage in the Face of the Status Quo

What Audrey’s Children makes unmistakably clear is that Dr. Evans’ vision was not universally welcomed.

She spoke up when silence would have been safer.
She pushed for change when compliance would have protected her career.
She challenged institutional norms knowing full well she could face retaliation—or undo her life’s work.

And yet, she kept going.

One moment in the film stopped me completely: when Dr. Evans learned that a mother of one of her patients was sleeping on hospital floors and in her car, she didn’t escalate a complaint or write a memo.

She brought the mother home to live with her.

That single act says everything about who she was.

Dr. Evans passed away in 2022. But watching her story now, it is clear that her courage did not die with her. It multiplied.

The Birth of the Ronald McDonald House—and a Radical Idea

In 1974, in Philadelphia—just steps from CHOP—Dr. Evans helped found the first Ronald McDonald House, not as a charitable afterthought, but as an extension of care itself.

That house came to life through the shared vision and collaboration of Dr. Audrey Evans, Fred Hill, a Philadelphia Eagles player whose daughter was being treated for leukemia, Jim Murray, a local McDonald’s owner-operator, and the Philadelphia Eagles organization. Together, they recognized a human crisis hiding in plain sight—and chose to act.

The house was designed to feel like a home.
Warm. Familiar. Human.

Wood paneling. Hand-carved details. Stained-glass windows. A place where families could exhale.

That single house became the model for what is now a global network serving millions of families, free of charge. Yet the philosophy has never changed:

Care does not stop at the hospital door.

Where I First Felt It—Philadelphia

Before Minneapolis, before the long months away from home, there was Philadelphia.

When the commute for early-morning, extensive medical testing at CHOP became too challenging, my daughter and I stayed at the original Ronald McDonald House there.

I remember walking through the house and feeling something immediately different. As sunlight poured through the stained glass, a rainbow of colors moved across the walls—soft, warm, and alive. The light gleamed with a quiet beauty that felt intentional, almost protective.

I remember slowly moving my hand along the carved wooden railings and paneled walls, taking in the craftsmanship, the care, the humanity embedded in the space. It didn’t feel like an institution. It felt like being inside someone’s grandmother’s house—a house of healing.

That environment mattered more than I knew at the time.
It steadied me.
It softened fear.
It reminded me we were held.

Only now do I understand whose vision made that possible.

When Whole-Family Care Became Our Reality

In 2014, when our son underwent a Total Pancreatectomy with Auto-Islet Cell Transplant in Minneapolis, Minnesota, that same philosophy became our lifeline.

We were from New Jersey.
We knew no one.
We were living in a city across the country while our son fought for his life.

And yet—we were not alone.

At the Ronald McDonald House, we didn’t just stay.
We lived.

Our daughter attended school there while her brother healed, trying to preserve some sense of normalcy. There was a communal kitchen where we could cook for our family when we had the strength—and where strangers cooked for us when we didn’t.

Every night, volunteers showed up. Families. Companies. Churches. Therapy dogs. People whose only qualification was compassion.

There was a van to take us to the hospital, to outpatient visits, back and forth for months.

There were games, crafts, a library, a full-size basketball court, and shared spaces filled with life. Our room was a studio apartment with our own bathroom—privacy, dignity, and rest.

And when our son went into full-blown sepsis with double aspiration pneumonia, it wasn’t just medicine that saved him.

Another father—whose own child was being treated—helped get him to the hospital. Others accompanied us to the ER and stayed with us. That instinctive, human response quite literally contributed to saving his life.

That is what whole-family care looks like in real time.

Twelve years later, we are still connected to some of those families. Trauma may fade—but shared humanity endures.

A Word to the Medical Community

This part is for the doctors, nurses, researchers, therapists, social workers, hospital staff, and volunteers who may read this.

Dr. Audrey Evans’ legacy is not a rebuke.
It is a reminder.

A reminder of why you chose this path.
A reminder that relationship is not a weakness in medicine—it is a stabilizer.
A reminder that systems exist to serve people, not the other way around.

Yes, medicine today is constrained by regulation, bureaucracy, fear of liability, and division. That has always been true. What must not be lost is courage—the courage to see families as part of the treatment plan, to collaborate across disciplines, to advocate even when it is uncomfortable.

Whole-child and whole-family care does not diminish science.
It completes it.

Dr. Evans understood that caring for families also sustains clinicians—reconnecting them to meaning, purpose, and the reason they became healers in the first place.

“What Am I Supposed to Do When I Don’t Have the Answers?”

There is a moment in the film when Dr. Evans reflects on the weight of being a physician—on the expectation that patients and families place on you to know.

She asks:

They look to me to have all the answers. What am I supposed to do when I don’t have them? Should I accept that this is how things are—or should I fight with everything I’ve got to change that?

And then the line that lingers:

Our children are counting on us to rise to the occasion and figure this out. We owe it to them to do just that.

That is not only a call to medicine.
It is a call to all of us.

A Legacy That Still Matters

Dr. Audrey Evans did more than change pediatric oncology.
She built the scaffolding that held families like mine when we could not hold ourselves.

I never knew her name until last night.
But my children are alive, in part, because others followed in her footsteps.

For that, she will always be one of my heroes.

A Continued Thank You

This reflection would be incomplete without honoring the Ronald McDonald House organization as a whole—and the people who had the courage to build it in the first place, as well as the volunteers who continue to bring it to life every day.

What began in Philadelphia through the shared vision of Dr. Audrey Evans, Fred Hill, Jim Murray, and the Philadelphia Eagles organization has become a global expression of compassion in action.

To the volunteers who cooked meals night after night.
To those who stocked kitchens, cleaned rooms, drove vans, organized activities, taught classes, played games, and showed up quietly without needing recognition.
To the staff who hold space for grief, fear, hope, and healing—often all at once.

You may never fully know the impact of your presence in those moments. But I do.

Because when our family was far from home—scared, exhausted, and living day-to-day inside uncertainty—you created a place where we could rest, gather strength, and keep going.

You helped us survive one of the hardest chapters of our lives.
And you helped save our son—not just through medicine, but through community.

That is not incidental care.
That is essential care.

Thank you for carrying forward a vision rooted in courage, compassion, and collaboration.
Thank you for reminding families like mine that even in the hardest moments, we are not alone.

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Jacqueline Capriotti — widely known as the MAHA Jersey Girl — is a strategist, writer, and lifelong health advocate whose work sits at the intersection of chronic illness, public health, and patient-centered reform. She is the co-founder of Doctors for America First and the Childhood Pancreatitis Foundation, and a former New Jersey Chapter Board Member of the Cystic Fibrosis Foundation. Jacqueline also serves on the Patient and Family Advisory Council at the Hospital of the University of Pennsylvania, bringing lived experience directly into institutional improvement.

She is the founder of the Victory Garden Alliance and Health Revolution USA, initiatives dedicated to rebuilding community health, strengthening food systems, and restoring trust between patients, providers, and public institutions. As the mother of two young adults with cystic fibrosis, Jacqueline has spent more than 15 years navigating complex medical landscapes, advocating for clinical trial innovation, and fighting for the dignity, safety, and informed consent of families like hers.

Through her writing and national advocacy, Jacqueline gives voice to patients, caregivers, and communities too often overlooked in policy discussions. Her mission is simple and urgent: to ensure that America becomes a place where families do not have to outlive their children — and where health, truth, and humanity guide the future of medicine.

I am not anti-vaccine. In fact, my family’s life story makes that impossible. Both of my children have cystic fibrosis — a rare, life-threatening genetic disease — and one of them suffered years of debilitating pancreatitis until he ultimately required a Total Pancreatectomy with Auto-Islet Cell Transplant. My children live in the category public health calls “vulnerable” or “high risk.”

In other words, we depend on medical innovation. We depend on vaccines. We depend on therapies that work — and work well.

Because of that, we also depend on something the system is failing to deliver: real transparency, real safety monitoring, and real honesty about what we still do not know.

Why “the Science is Settled” was Never Meant for Families like Mine

Vaccines and medications are not casual interventions. We introduce them into the bodies of our newborns, our infants, our children, our medically fragile teens, and again and again into adulthood. Families like mine need these products to be continuously improved — because the pathogens we face are already evolving at rapid speed.

And yet, instead of progress, we are handed slogans. Instead of rigorous, real-world data, we are told to trust the process. That is not good enough for families living on the edge of medical uncertainty.

Our Post-approval Safety System is Not a System at All

This truth extends far beyond vaccines. Our entire post-market drug safety structure — whether through VAERS for vaccines or FAERS for medications — is outdated, fragmented, and incapable of giving the American public what modern medicine requires: clarity, data, transparency, and confidence.

The honest reality is that we do not have a meaningful national understanding of what these products do months or years after approval, nor how they interact with each other in real-world bodies. We lack visibility into short-term and long-term cumulative effects, especially in medically complex patients like my children.

There are massive blind spots — and at times, it feels like a black hole where a safety system should exist.

Side Effects are Real — and my Daughter’s Reaction Proved It

My daughter had a severe reaction to a COVID booster. Within hours she turned bright red from head to toe — an alarming inflammatory response that brought her to the edge of anaphylaxis. She was monitored in the hospital for hours. It was terrifying. And it was unmistakably real.

To this day, I do not know whether that reaction was ever formally reported. If a clinician entered it into VAERS, I’m grateful — but no one told me, no one walked me through it, and no one confirmed it.

Then came the part that changed everything:

Her cystic fibrosis team instructed that she can no longer receive an mRNA COVID vaccine because she would likely progress into full anaphylaxis.

Thank God the reaction resolved and she did not develop a long-term side effect. Unfortunately, many have not been so lucky. But it left us with a painful question no parent should have to sit with: Did this event now make her more susceptible to experiencing this type of reaction in the future?

No one can answer that for us — not because science is too complicated, but because the system does not track this information in any meaningful, longitudinal way.

And here is the heartbreaking truth: despite that reaction, despite the fear, despite the uncertainty — we are still dependent on these vaccines because of my children’s profound pathogenic vulnerability.

We do not have the luxury of pretending the system is perfect.

We live inside its gaps.

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VAERS and FAERS: Systems in Name Only

Every time someone raises a safety question, the responses follow a familiar pattern:

“Well, VAERS exists.”

“But it’s unreliable because it’s self-reported.”

“Still, it’s the only system we have.”

This is not a functioning safety system. This is a contradiction we have normalized.

We need something different — something modern, integrated, and accountable. We need reporting that is standardized and mandatory. We need active surveillance, not passive forms filled out “if someone remembers.” We need a system where families like mine don’t have to guess whether a life-threatening reaction simply vanished into silence.

The Chronic Illness Epidemic Cannot be Brushed Aside

We are living through the greatest explosion of chronic illness in modern American history. Autoimmune disorders, inflammatory conditions, allergies, POTS, dysautonomia, and complex pediatric cases are rising at unprecedented rates. This is happening at the same time we have the most advanced preventive medical tools ever developed.

Do vaccines play a role in this?

We don’t know.

And that is precisely the point:

We don’t have the data structure needed to answer the question.

Science cannot learn when a system prevents visibility.

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What I Need to Say Most Clearly

The system is not designed around people like my children.

It is not designed around medically vulnerable patients who depend on therapies for survival. It is not designed around long-term follow-up, real-world monitoring, or transparency. And it is certainly not designed around capturing the nuances of what happens when complex bodies interact with complex interventions.

Families like mine deserve better — not because we are demanding perfection, but because we are asking for basic scientific responsibility:

continuous improvement, transparent reporting, honest inquiry, and the courage to ask unasked questions.

And Yet — I am Hopeful

Despite everything, I am hopeful.

Because for the first time in decades, we have senior federal leadership willing to confront chronic illness, data failures, and the need for patient-centered reform:

• HHS Secretary Robert F. Kennedy Jr. is prioritizing chronic illness, transparency, and meaningful reform.

• FDA Commissioner Dr. Marty Makary is working to restore honesty, accountability, and public trust.

• NIH Administrator/Director Dr. Jay Bhattacharya is championing scientific humility, open data, and the freedom to pursue neglected questions.

• CMS Administrator Dr. Mehmet Oz is calling for modernization, outcome-driven care, and national systems that actually measure whether treatment improves a patient’s life.

Meanwhile, emerging AI technologies are giving us the ability to do what should have been done years ago: integrate VAERS and FAERS, detect early safety signals, analyze billions of data points, unify health records, and finally illuminate patterns that have remained hidden.

For the first time, it feels genuinely possible to rebuild our safety systems into something worthy of the trust medically vulnerable families must place in them every single day.

We Can Fix This. We Can Build Something Better.

For my children.

For your children.

For every family living with medical fragility.

For a healthier, more honest America.

With honesty — and with hope,

Jacqueline Capriotti

Jacqueline Capriotti — widely known as the MAHA Jersey Girl — is a strategist, writer, and lifelong health advocate whose work sits at the intersection of chronic illness, public health, and patient-centered reform. She is the co-founder of Doctors for America First and the Childhood Pancreatitis Foundation, and a former New Jersey Chapter Board Member of the Cystic Fibrosis Foundation. Jacqueline also serves on the Patient and Family Advisory Council at the Hospital of the University of Pennsylvania, bringing lived experience directly into institutional improvement.

She is the founder of the Victory Garden Alliance and Health Revolution USA, initiatives dedicated to rebuilding community health, strengthening food systems, and restoring trust between patients, providers, and public institutions. As the mother of two young adults with cystic fibrosis, Jacqueline has spent more than 15 years navigating complex medical landscapes, advocating for clinical trial innovation, and fighting for the dignity, safety, and informed consent of families like hers.

Through her writing and national advocacy, Jacqueline gives voice to patients, caregivers, and communities too often overlooked in policy discussions. Her mission is simple and urgent: to ensure that America becomes a place where families do not have to outlive their children — and where health, truth, and humanity guide the future of medicine.

Today is Giving Tuesday — a day meant for generosity, compassion, and remembering the causes that change lives. This year, I’m sharing something deeply personal.

For those who follow my work on chronic illness, healthcare reform, and MAHA, you know my advocacy didn’t begin in policy rooms or campaign spaces.
It began in hospital rooms, at the bedsides of my two children, Jon and Emily, who live with cystic fibrosis.

CF is relentless.
It demands courage from my children every single day — courage that humbles me, inspires me, and fuels everything I do.

And while treatments have advanced, while miracles of science have given us more time, more breath, more possibility…

We are not done.
Not even close.

A Powerful Matching Gift: Every Dollar Today Is Doubled

I’m incredibly grateful to share that the Stremick Family is matching every donation made today, dollar for dollar.

That means your generosity will go twice as far —
twice the research,
twice the hope,
twice the impact for families like mine.

Why I’m Asking

Our annual CF walk may be over, but our fight is not.
We are still accepting donations through the end of the year, and Giving Tuesday is one of the most meaningful moments to support this cause.

As a parent, there is no greater fear than waking up each day with the weight of knowing you may outlive your children.
This is the reality so many CF families carry.

Every single donation — large or small — pushes research forward, supports families, and keeps hope alive for Jon, for Emily, and for thousands of others living with cystic fibrosis.

We will not rest until CF is cured.
Not until every family walking this journey can finally breathe easier — literally and figuratively.

What the Cystic Fibrosis Foundation Actually Funds

(So donors truly know where their dollars go)

Many people don’t realize just how significant the CF Foundation has been — not just for CF families, but for medical innovation nationwide.

Here’s a clear look at what they fund:

1. Breakthrough Drug Development

The CF Foundation invests heavily in biotech and research partnerships that accelerate new therapies.
Their venture philanthropy model directly contributed to life-changing modulators like:

• Kalydeco

• Orkambi

• Symdeko

• Trikafta

• And most recently, Alyftrek, which treats rare CFTR mutations like the ones my children have.

These therapies exist because of donor-funded research.

2. Clinical Trials & Rare Mutation Studies

They support trials across top medical centers in the U.S., including studies specifically for rare and ultra-rare CFTR mutations — the very programs that helped my children finally access advanced therapies.

3. Specialized CF Care Centers

CF-approved centers receive funding to ensure patients have access to:

• multidisciplinary teams,

• specialized pulmonologists,

• nutritionists,

• mental health support,

• research coordinators,

• and teams trained to address the complex realities of CF.

4. Insurance & Resource Navigation

The CF Foundation directly helps families navigate:

• insurance approvals and appeals,

• access to high-cost medications,

• treatment authorizations,

• clinical care pathways,

• and connections to vital local and national resources.

For many, this support is the difference between receiving lifesaving care — or going without.

5. Quality-of-Life Support for Families

This includes emergency financial assistance, travel for medical care, and programs designed to ease the overwhelming burden of chronic illness.

6. Next-Generation Cure Research

The CF Foundation is moving aggressively toward a cure through investments in:

• gene therapy,

• gene editing,

• mRNA-based therapies (who this technology was originally intended to help),

• CRISPR applications,

• microbiome research,

• and next-generation breakthroughs to fight antimicrobial-resistant pathogens (AMRs), one of the greatest emerging threats to the human race).

Because CF patients battle chronic lung infections from childhood, CF science has been on the front lines of AMR research for decades.
We have lived this crisis long before it became a national and global threat.

7. Research That Helps Everyone

What many people don’t realize is that discoveries from CF research have repeatedly benefited the general public, especially in:

• pulmonary health,

• infectious disease,

• metabolic health,

• digestive disorders,

• and microbiology at large.

From better understanding mucus and lung function, to advances in pancreatic care, to breakthroughs in gut health — CF science has quietly helped shape some of the most important medical innovations of our time.

When people give to the CF Foundation, they aren’t just helping a rare disease.
They’re helping unlock discoveries that benefit millions.

How to Support

👉 Donate here:
https://nclvm.com/5i96t

Your gift today is doubled.
Your kindness is felt.
And your support truly changes lives.

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From My Family to Yours

Thank you — sincerely — for showing up for us today, and for the love and support you’ve shown throughout the years.
Your generosity gives us strength, gives us hope, and reminds us we don’t walk this path alone.

With deepest gratitude,
Jacqueline

Jacqueline Capriotti — widely known as the MAHA Jersey Girl — is a strategist, writer, and lifelong health advocate whose work sits at the intersection of chronic illness, public health, and patient-centered reform. She is the co-founder of Doctors for America First, co-founder of the Childhood Pancreatitis Foundation, and a former New Jersey Chapter Board Member of the Cystic Fibrosis Foundation. Jacqueline also serves on the Patient and Family Advisory Council at the Hospital of the University of Pennsylvania, bringing lived experience directly into institutional improvement.

She is the founder of the Victory Garden Alliance and Health Revolution USA, initiatives dedicated to rebuilding community health, strengthening food systems, and restoring trust between patients, providers, and public institutions. As the mother of two young adults with cystic fibrosis, Jacqueline has spent more than 15 years navigating complex medical landscapes, advocating for clinical trial innovation, and fighting for the dignity, safety, and informed consent of families like hers.

Through her writing and national advocacy, Jacqueline gives voice to patients, caregivers, and communities too often overlooked in policy discussions. Her mission is simple and urgent: to ensure that America becomes a place where families do not have to outlive their children — and where health, truth, and humanity guide the future of medicine.

👉 Donate here to our Cystic Fibrosis Walk Team:
https://nclvm.com/5i96t

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Before I share this story, it’s important to understand why I am telling it — and who I am telling it on behalf of.

United Doctors of America, Inc. is a 501(c)(3) national nonprofit founded to protect the sacred relationship between patient and provider, restore integrity to healthcare, and advocate for the men and women who dedicate their lives to healing others. Our mission is simple but urgent:

• Defend the voices, safety, and wellbeing of healthcare professionals

• Advocate for patient-centered, transparent, accountable medicine

• Expose the systemic failures and hidden risks harming both clinicians and patients

• Advance policies that protect frontline workers and strengthen the healthcare system from the inside out

We exist because far too many doctors, nurses, technologists, and allied professionals are being silenced, burned out, injured, or pushed aside by systems that no longer protect them. And when healers are harmed, patients are harmed.

Our work is about restoring balance — and honoring the people who hold up the entire healthcare system with their bodies, their minds, their skill, and their sacrifice.

That is why this story matters.
That is why I am writing this.
And that is why United Doctors of America, Inc. will not look away.

I walked into the hospital that morning thinking only about my father. He was about to undergo heart surgery — the kind of moment that collapses your world into a single point of prayer and breath. There is a particular stillness that hangs in those waiting rooms: hope, fear, fluorescent lights, and the quiet understanding that everyone there is holding someone they love inside their heart.

I sat down next to a man I did not know. We exchanged a polite hello. But within minutes, the tone shifted. His voice carried urgency, like he had been waiting for someone — anyone — willing to listen.

His name was Grant MacWilliam, a technologist who worked with Protego, a company that supplies suspended radiation protection systems for procedural suites. What he shared with me in that waiting room was not just information. It was an assignment — one I didn’t know I was about to be given.

A Crisis Hidden in Plain Sight

Grant explained that interventional cardiologists, interventional radiologists, vascular specialists, and cath-lab teams are exposed every day to some of the highest levels of occupational radiation in medicine. He didn’t speak like a marketer or a salesman. He spoke like someone watching people he cared about get hurt.

“These clinicians are absorbing doses that would get someone pulled off a nuclear site,” he told me.
“But no one talks about it.”

The “protection” most hospitals rely on is the outdated, 30-pound lead apron — a relic that does little to shield critical organs and everything to destroy the clinician’s spine over years of procedures. Disc herniations. Degenerative hip disease. Shoulder damage so advanced some physicians can’t lift an arm by mid-career.

The scientific literature is clear:

• Interventional clinicians have higher rates of left-sided brain tumors, where the head is closest to the X-ray tube.

• They face increased thyroid cancers, cataracts, hematologic malignancies, and musculoskeletal breakdown.

• The Society of Interventional Radiology (SIR) and the National Council on Radiation Protection and Measurements (NCRP) warn that many clinicians exceed recommended exposure limits.

But the most haunting truth was this:

Many clinicians quietly remove their radiation dosimeters so they can keep treating patients.

If the badge documents too much exposure, hospital policy can sideline them. So they take it off. Slide it into a drawer. Clip it on a shield across the room.

They do it because if they don’t, lives could be lost.

And they do it because the system makes them choose between their job and their safety.

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The Marine’s Coin

As our conversation ended, Grant reached into his pocket and placed something in my palm as we shook hands goodbye. It was heavy, intricate — unmistakably significant. A United States Marine Corps challenge coin, inscribed with:

MSGT MacWilliam C.C.

Challenge coins are not souvenirs. They are given in the military to mark trust, honor, and mission. They represent a moment when one person recognizes something in another — and passes forward responsibility.

Grant didn’t explain it directly. He didn’t have to.

The coin was the message.

Later, when I connected with Mark Hansen, the Vice President at Protego, he laughed softly and said,

“You were coined, weren’t you?”

Yes.
I was.

And once you’ve been coined, you carry the mission.

The Burden They Carry — While Fighting America’s Fastest-Growing Disease

Over the next 24 hours, Mark filled in the picture with the rest of the truth. Interventional clinicians in America are fighting the number one cause of death — heart disease — a condition that is no longer limited to older adults.

Our patients are:

• Younger

• Sicker

• More inflamed

• More metabolically unwell

• More dependent on emergent and interventional procedures

Lifestyle-driven metabolic dysfunction is overwhelming the system. And while clinicians fight to save lives, they themselves are being slowly harmed by the very tools meant to diagnose and treat.

Procedures last hours. Cases begin before dawn and end after midnight. And all the while, scatter radiation silently penetrates bone marrow, thyroid tissue, the brain, reproductive organs.

These doctors are risking their own lives to save patients — many of whom are sick because America is drowning in chronic disease.

Some clinicians go home unable to pick up their children because of their spine injuries.
Some retire early, worn down physically.
Some develop cancers with no family history.
Some don’t survive long enough to see retirement at all.

Yet they keep showing up.
They scrub in again.
They fight for strangers.
They absorb the risk because someone’s life depends on it.

And that unspoken heroism is what makes the system’s neglect all the more devastating.

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The Documentary Exposing the Truth

A new documentary finally shines a spotlight on this buried crisis:

🔗 SCATTERED DENIAL

http://scattereddenial.com/

It reveals the dangers, the denial, and the preventable suffering endured by medical professionals whose only “crime” is caring too deeply.

If Medicine Is Going to Keep Up, We Must Protect the People Holding the Line

This moment — this crisis — is bigger than operational policy.
It is a national moral failing.

If America’s health continues to decline…
If cardiovascular disease continues to rise…
If metabolic disorders continue to ravage younger populations…
Then our interventional workforce is about to face an even greater burden.

They cannot keep saving us while we allow the system to quietly break them.

They are healers, not collateral damage.

United Doctors of America, Inc. is calling for immediate reforms:

• Modern radiation shielding in all interventional suites

• Real-time cumulative exposure monitoring

• National registries for radiation-linked disease

• OSHA classification of interventional medicine as a high-risk environment

• Federal and CMS incentives to accelerate adoption of new technologies

• Ergonomic standards to retire outdated lead aprons

• Whistleblower protections for those reporting unsafe conditions

These are not luxuries.
They are the bare minimum owed to the people who are saving American lives every single day.

A New Mission — Placed in My Hands in a Hospital Hallway

I walked into that waiting room as a daughter, praying for her father. I walked out with something I never expected — a mission passed to me quietly by a man who simply could not look away anymore.

Grant didn’t know my background, my children’s medical journey, or my work in health reform and chronic illness advocacy. He didn’t know my lifelong commitment to healing the sacred relationship between patient and provider.

But somehow, he saw I was meant to carry this forward.

So now, I’m passing it to you.

Protect the healers who protect us.
The people saving America’s hearts should not have to sacrifice their own.

Jacqueline Capriotti — widely known as the MAHA Jersey Girl — is a strategist, writer, and lifelong health advocate whose work sits at the intersection of chronic illness, public health, and patient-centered reform. She is the co-founder of Doctors for America First, co-founder of the Childhood Pancreatitis Foundation, and a former New Jersey Chapter Board Member of the Cystic Fibrosis Foundation. Jacqueline also serves on the Patient and Family Advisory Council at the Hospital of the University of Pennsylvania, bringing lived experience directly into institutional improvement.

She is the founder of the Victory Garden Alliance and Health Revolution USA, initiatives dedicated to rebuilding community health, strengthening food systems, and restoring trust between patients, providers, and public institutions. As the mother of two young adults with cystic fibrosis, Jacqueline has spent more than 15 years navigating complex medical landscapes, advocating for clinical trial innovation, and fighting for the dignity, safety, and informed consent of families like hers.

Through her writing and national advocacy, Jacqueline gives voice to patients, caregivers, and communities too often overlooked in policy discussions. Her mission is simple and urgent: to ensure that America becomes a place where families do not have to outlive their children — and where health, truth, and humanity guide the future of medicine.

If you need help right now, please call or text 988. Help is available 24/7.

Walk through any hospital hallway in America and you’ll feel it before you see it:
the heaviness, the hurriedness, the emotional static that clings to everyone wearing a badge.

A resident leans against the wall at 6:00 a.m., already exhausted before the day begins.
A nurse laughs with a patient, then goes quiet when the curtain closes.
An attending walks briskly, eyes fixed ahead, carrying stories no one has time to hear.

We use words like hero to describe them.
But I’ve learned that heroism has a cost, and many of the people we depend on to save our lives are quietly losing pieces of their own.

This isn’t just burnout, or long hours, or “stress.”
This is an epidemic of depression, anxiety, and suicide among America’s healers — one so persistent and widespread it can no longer be brushed aside as a collection of individual tragedies.

Something much deeper is happening.

And the more I explore it, the clearer the pattern becomes:
The professions with the highest suicide rates — healthcare, the military, agriculture, and education — are all cracking under the weight of systems that were never built to protect the human beings inside them.

This piece is about healthcare.
But healthcare is the closest mirror we have to a much larger truth.

The Numbers Are Stark — But Numbers Alone Don’t Tell the Story

Physicians report depression and burnout at rates far higher than the general population.
Nurses die by suicide more often than the patients they care for.
Medical and nursing students — the youngest among them — speak about despair with a fluency that should terrify us.

You can find the statistics. They’re everywhere.
But what matters more is this: behind every number is someone who spent their life trying to keep other people alive.

A pediatric resident who starts every shift praying no parent will have to hear the words “we did everything we could.”
A nurse practitioner who can feel her own chest tighten when the overhead pager calls another code in a room she just left.
A first-year med student who cries in her car before exams, wondering how something she worked so hard for has begun to unravel her from the inside.

People don’t choose medicine because they are fragile.
They choose it because they are strong — often extraordinarily so.

So when large numbers of them begin to struggle, there is only one honest conclusion:
the system is breaking them, not the other way around.

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The Unspoken Thread Connecting Healthcare, Military, Agriculture, and Education

For years, public health experts have tiptoed around one troubling observation:
the professions with the highest suicide rates in the United States are the same ones built on self-sacrifice.

Different uniforms, different missions, different settings — but the same structural pattern:

• Workloads no human nervous system can withstand

• Exposure to trauma and life-altering responsibility

• A culture that discourages asking for help

• Isolation — emotional, geographic, or both

• A sense of moral injury when the system forces people to act against their own values

• Easy access to lethal means

• Leadership that responds with slogans instead of support

It’s almost chilling in its consistency.

When the system is designed to take more than a person can safely give —
and when the culture teaches them that voicing pain is weakness —
despair becomes an occupational hazard.

Healthcare’s Breaking Point: The Human Cost Beneath the Scrubs

Ask clinicians how they’re doing, and you’ll often hear:

“I’m fine.”
“Just busy.”
“It’s part of the job.”

But if you sit long enough with them — long enough for the armor to soften — a more honest truth emerges.

Many feel they’re being pulled apart by competing forces:
their calling to heal, and the machinery of a system that demands speed over connection, quantity over quality, compliance over humanity.

They carry stories no one taught them how to hold:
the patient whose pulse slipped away under their hands,
the error they replay in their mind at 3 a.m.,
the insurance denial that cost someone precious time,
the child they couldn’t save and the family they couldn’t console.

And because the culture of medicine still valorizes perfection, they often carry these privately — believing they are alone.

But they aren’t.
Not even close.

What We Don’t Say Out Loud

Here is the truth that rarely makes it past hospital walls:

Clinicians are not leaving medicine because they stopped caring.
They are leaving because they care so deeply that it is breaking them — and the system gives them no place to put the weight.

When someone reaches a point of despair, it is not because they “weren’t resilient enough.”
It is because the system they serve was never built to protect them.

We don’t lose healers to suicide because they are weak.
We lose them because the silence is deadly, the expectations are impossible, and the support is insufficient.

What Is Changing — And What Still Must

You can see glimmers of hope:
peer-support circles, reforms to licensing questions, hospitals experimenting with real-time mental health access, new technologies that ease the charting burden, professional communities advocating openly for change.

But these are still islands in an ocean.

The deeper shift we need isn’t about wellness programs or resilience seminars.

It’s about courage — the courage to redesign systems that treat healers as human beings instead of infinite resources.

It means staffing that allows dignity.
Schedules that allow life.
Leadership that listens.
Training that nurtures instead of breaks.
Policies that make asking for help a strength, not a liability.
Culture that says, “We will not lose you. Not to silence. Not to shame. Not to despair.”

A Path Forward

Imagine a healthcare system where:

• A doctor can say “I’m not okay” without fear of retribution.

• A nurse can take a real break without feeling guilty.

• A student can admit they’re struggling and be met with structural support, not performative sympathy.

• A clinician can seek therapy without wondering who will find out.

• Leadership measures compassion with the same seriousness as productivity.

Picture a culture where healing includes the healers.

This isn’t idealism.
It’s survival — for them, and for all of us who will someday depend on their hands.

Because the truth is simple:
the people who hold our hands in our darkest moments deserve systems that protect theirs.

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Key Resource: Suicide Prevention Guide for Healthcare Workers

We recommend the comprehensive guide produced by the American Hospital Association in collaboration with VITAL WorkLife:
“Suicide Prevention – Evidence-Informed Interventions for the Health Care Workforce”
Download link: https://www.aha.org/system/files/media/file/2022/09/suicide-prevention_evidence-informed-interventions-for-the-health-care-workforce.pdf American Hospital Association+1

Why this guide matters

• It identifies three key drivers of suicide risk among clinicians: behavioral-health stigma, limited access to treatment, and job-related stressors. American Hospital Association+1

• It presents twelve evidence-informed interventions organized by focus areas (Access, Operational Enhancements, Organizational Campaigns, Training), with accompanying metrics that hospitals and systems can use. American Hospital Association+1

• It serves as a practical blueprint for healthcare organizations that want to move from talking-about to doing.

How you can use it

1. Share it with your leadership, wellness committees, and peer-support groups.

2. Use the list of interventions to audit your system: Which are in place? Which are missing?

3. Use the metrics to track progress: e.g., % of clinicians who feel safe seeking help, time between screening and referral, presence of dedicated wellbeing staff. American Hospital Association+1

4. Use it as a discussion starter in your institution: hold a meeting on how to adopt at least one of the interventions in the next quarter.

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There is a quiet war happening in the world — one most people never see.
It doesn’t resemble the wars taught in history books. There are no borders, no treaties, no generals. The armies are microscopic, ancient, relentless.
They live in water, soil, hospital surfaces, and human lungs.

For families like mine, living with cystic fibrosis, this war is not abstract.
It has lived inside our children since the day we learned the truth.

The Day Our Lives Split in Two

In 2010, everything changed.
Our children’s diagnosis did not arrive through newborn screening. It arrived suddenly — and with it, an avalanche.

Within days, we learned our children were already colonized with Pseudomonas aeruginosa, Aspergillus, and Staphylococcus aureus.
Organisms we had never heard of were already shaping their lungs, their health, their future.

“We weren’t eased into cystic fibrosis. We were dropped into the deep end.”

There was no gentle education.
No gradual understanding.
Only an immediate crash-course in microbiology, pharmacology, and survival.

We learned to pronounce the names of bacteria as if we had always known them.
We rattled off culture results to every new medical team.
We memorized treatments most people never learn exist.

And treatment began immediately.

Weeks of IV multi-antibiotic regimens became standard — not to cure the infection, but to quiet the army inside. In CF, antibiotics do not bring victory. They buy time.

Years later, one of my children added MRSA to the list — another organism joining the colony that had taken root deep in their lungs.
None of these infections have ever been eradicated.

They live with them.
We all live with them.

The Hidden Cruelty of Colonized Lungs

What most people never realize is that the organisms inside CF lungs don’t just shape treatment —
they shape connection.

Because of cross-infection risks, the CDC recommends CF patients stay at least six feet apart from each other.
Six feet — a distance that became symbolic for the world in 2020, but one CF families have lived by for decades.

CF children grow up knowing:

They cannot sit next to someone with their own disease.
They cannot hug another CF kid.
They cannot share a couch, a toy, a hospital playroom.

Hospital visits required N95 masks long before the world learned the term.
Support groups were virtual before “virtual” was normal.

“The people who understand their life the most are the very people they cannot touch.”

CF teens fall in love with people like themselves and are told their love is dangerous.
They grieve the deaths of friends they never got to hold.

CF takes breath — but AMR takes belonging.

Moments You Don’t Forget

There are scenes from this journey that live inside me permanently:

Calming my child as they coughed up bright red blood.
Running to the ER in the middle of the night with shaking hands.
Watching a PICC line clot turn into sepsis that nearly took my son’s life.
Seeing tendon injuries from quinolones.
Seeing the world go quiet in one ear from tobramycin toxicity.
Watching psychosis unfold from Bactrim.
Watching funeral after funeral in the CF community, whispering:
When is it our turn?

“CF teaches you to celebrate every breath — and fear every fever.”

But this is where personal experience intersects with global truth:

CF families were simply forced to learn early what the world is learning now.
The microbes are getting smarter.

Beyond CF: A Global Crisis Unfolding

AMR is already one of the leading causes of death in the United States and worldwide.
Not projected — already.

The CDC reports over 2.8 million resistant infections in the U.S. each year.
Over 35,000 deaths.
The WHO calls AMR one of the top ten global threats to health.

A landmark Lancet study revealed:

1.27 million people died directly from AMR in 2019,
with nearly 5 million deaths associated worldwide.

“AMR is the slow unraveling of modern medicine.”

This is not just a medical issue.
It is a national security issue.
A global security issue.
A civilization issue.

AMR reaches into every corner of life, touching people and ecosystems in ways most of the world still doesn’t fully understand. It affects patients recovering from routine surgeries and cancer patients relying on chemotherapy to stay alive. It threatens premature infants whose immune systems are barely formed, and trauma victims whose survival depends on fast, effective treatment. It impacts soldiers on the battlefield, farmworkers in the fields, and families living in communities without reliable sanitation. It spreads through water systems and food production pipelines, through soil, livestock, and even the family pets who share our homes. It strains intensive care units and destabilizes already fragile healthcare systems. AMR travels silently — person to person, animal to human, environment to food chain — revealing a truth that is impossible to ignore: there is no part of society, no age group, no industry, and no species that remains untouched.

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Biofilms: The Fortresses We Cannot Reach

Most people imagine bacteria floating freely —
but the real battle is against biofilms.

Biofilms are dense, glue-like fortresses built by bacteria for survival.
Inside them, bacteria share resistance genes like soldiers passing ammunition.

Antibiotics often cannot reach the bacteria inside.
Surfaces cannot be easily disinfected.
Hospitals struggle to eliminate them.

“Biofilms don’t just resist treatment — they teach bacteria to resist faster.”

AMR doesn’t only outsmart medicine.
It outsmarts cleanliness.

Surfaces once considered “sanitized” may no longer be safe.
Alcohol sanitizers evaporate before fully neutralizing pathogens.
Hospital disinfectants can smear instead of kill.

We are fighting today’s pathogens with yesterday’s tools.

Phage Therapy: A Light on the Horizon

If biofilms are fortresses, bacteriophages — phages — are one of the few weapons capable of infiltrating them.

Phages are viruses that hunt bacteria with precision.
They can reach places antibiotics cannot.
They multiply only when needed.
They disappear when the job is done.

Mallory Smith, colonized with Burkholderia cepacia, received compassionate phage therapy near the end of her life. Her family turned grief into global advocacy through the Global AMR Diary.

“We cannot fight evolving organisms with strategies that stand still.”

Phages aren’t science fiction.
They’re a future we must invest in — urgently.

The Part No One Wants to Say Out Loud

There is one more truth we must face:

Our human enemies understand this vulnerability.

Biological agents have been used in conflict throughout history.
Modern intelligence briefings acknowledge the possibility that resistant organisms can be intentionally bred, selected, or deployed.

Not speculation. Not conspiracy.
A documented national security concern.

“AMR is not only nature’s evolution — it is a potential weapon in the hands of hostile actors.”

If we fail to invest in AMR innovation now —
new disinfectants, new therapies, new defenses —
we leave our nation and the world vulnerable not only to natural outbreaks,
but to intentional ones.

The microbes evolving in CF lungs are the same microbes that could destabilize economies, militaries, and societies if weaponized.

This is the battlefield our children — and the next generation — could inherit.

Unless we act.

A Final Plea — From a Mother to the World

My children’s lives depend on innovation.
Millions of lives do.

We cannot wait.
We cannot delay.
We cannot pretend this war is theoretical.

“We are fighting a war we didn’t choose — but we must choose to win it.”

The bugs are getting smarter.
We must be braver.
We must be faster.
We must be willing to evolve as fast as the microbes do.

This AMR Awareness Week, let this be the moment the world wakes up.

Because the future of medicine —
and the future of humanity —
depends on it.

Jacqueline Capriotti — widely known as the MAHA Jersey Girl — is a strategist, writer, and lifelong health advocate whose work sits at the intersection of chronic illness, public health, and patient-centered reform. She is the co-founder of Doctors for America First, co-founder of the Childhood Pancreatitis Foundation, and a former New Jersey Chapter Board Member of the Cystic Fibrosis Foundation. Jacqueline also serves on the Patient and Family Advisory Council at the Hospital of the University of Pennsylvania, bringing lived experience directly into institutional improvement.

She is the founder of the Victory Garden Alliance and Health Revolution USA, initiatives dedicated to rebuilding community health, strengthening food systems, and restoring trust between patients, providers, and public institutions. As the mother of two young adults with cystic fibrosis, Jacqueline has spent more than 15 years navigating complex medical landscapes, advocating for clinical trial innovation, and fighting for the dignity, safety, and informed consent of families like hers.

Through her writing and national advocacy, Jacqueline gives voice to patients, caregivers, and communities too often overlooked in policy discussions. Her mission is simple and urgent: to ensure that America becomes a place where families do not have to outlive their children — and where health, truth, and humanity guide the future of medicine.

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By Jacqueline Capriotti | Health Revolution USA

When my son was fourteen, his body turned against him.
It sabotaged him from the inside out—first through his own organs, then through the system that was supposed to heal him. Every bite of food, every attempt to nourish him, became an act of danger. The very thing that should have sustained his life instead threatened to end it.

And while his body was attacking itself, the medical system was doing the same—rushing to put out fires instead of asking why they kept igniting.
To this day, what still shocks me is that I was the one who had to request a psych consult on day one. I knew no human being, let alone a child, could endure such relentless physical, mental, and systemic sabotage without breaking.

“It wasn’t just his body that betrayed him—it was the system that failed to ask why.”

The First Signs: When Breathing and Eating Collided

The clues began long before the first hospitalization.
As a little boy, he battled constant respiratory symptoms—lingering coughs, infections that returned, a heaviness in his chest that never seemed to clear. From the very beginning he struggled with failure to thrive, and struggled to hold anything down including breast milk. He had “stomach viruses” every couple of months, which would cause him to double over in extreme pain that would last for days at a time, that no one else in the house seemed to develop. Our concerns were continually dismissed. We didn’t yet know that these were early signs of cystic fibrosis, a disease that thickens mucus throughout the body, clogging airways and digestive tracts alike.

When the first known pancreatitis attack struck at fourteen, it was massive. His amylase and lipase—pancreatic enzymes that digest food—soared into the tens of thousands. What should have been an acute, passing episode turned into a nightmare that never ended. But had these been happening all along, some of the docs and we seem to think so.

At first, the attacks were intermittent. Then they became chronic.
By fifteen, they were 24/7—constant pain, inflammation, and nausea that no medication could control.

He could no longer attend school.
He spent roughly a third of his life inpatient at the Children’s Hospital of Philadelphia—two hours from home, separated from his sister, who herself began experiencing pancreatic flares by fourteen, though thankfully her course was less severe.

The Perfect Storm: Two Genetic Diseases, One Fragile Organ

Eventually, testing revealed the truth: a double diagnosis—Cystic Fibrosis and SPINK1, short for Serine Protease Inhibitor Kazal Type 1.
The SPINK1 gene makes a protein that stops trypsin, a digestive enzyme, from activating too soon. When that fails, trypsin ignites inside the pancreas, triggering autodigestion—the organ literally eating itself.

Cystic Fibrosis made his ducts thick and obstructed; SPINK1 removed the safety brake. Together they created a perfect storm.
Food—especially fat—became gasoline on the fire. His pancreas would swell, fill with fluid, and begin to destroy itself with every attempt to eat.

His blood enzyme levels reached over 40,000, sometimes too high to register at all.
He was eventually cited as one of the most extreme pediatric pancreatitis cases ever recorded.

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The Nutritional Paradox

After diagnosis came the impossible instructions:
Feed him a low-fat diet to protect the pancreas, but a high-calorie one for cystic fibrosis.
How do you nourish a body that rejects nourishment itself?

There was no training, no roadmap, and no compassion for the daily logistics. I became his dietitian by necessity—walking grocery aisles, scanning labels for fat grams and calories, trying to keep him alive one meal at a time.

He was five-foot-three, ninety-two pounds, and vanishing before my eyes. His pain was managed with Dilaudid and fentanyl, his nausea with Zofran, and his nutrition through TPN and later tube feeds. None of it was sustainable.
Medicine could measure his enzymes but couldn’t tell me how to feed my child.

“You can’t nourish a body that rejects nourishment—and yet that was exactly what we were told to do.”

The Surgery That Saved His Life

At sixteen, we reached the last option: a Total Pancreatectomy with Auto-Islet Cell Transplant (TP-IAT)—a surgery so rare it was performed by only one hospital in the country at the time.
They removed his pancreas to stop the pain, then transplanted his insulin-producing islet cells into his liver to preserve blood-sugar control.

It saved his life.
But survival isn’t the same as recovery.

Years of trauma left their imprint. He still lives with ARFID—Avoidant/Restrictive Food Intake Disorder—a physiological and psychological echo of years spent equating food with suffering.
Family meals remain unpredictable; his hunger clock was erased. Chronic nausea lingers and pain, although drastically less, extreme constant nausea, making each day a negotiation between courage and comfort.

Finding Others Like Us

In those years, we met other families walking the same impossible path—parents camped out in hospital rooms, sleeping in chairs, whispering encouragement across the hallways of children’s hospitals. We bonded through shared exhaustion and the unbearable recognition of each other’s pain.

Their stories mirrored ours: children misdiagnosed or dismissed, told their pain was anxiety or “functional,” parents made to feel hysterical or overinvolved.
Some had children with genetic pancreatitis, others with CF-related disease, but all faced the same cruel cycle—no answers, no nutrition guidance, no clear plan.

“We became our own teachers, researchers, and advocates—not because we wanted to, but because no one else knew how.”

That experience became the seed of what would later become the Foundation for Childhood Pancreatitis, which I co-founded with three other mothers, my son’s surgeon, a physician who had CF-related chronic pancreatitis, and a pediatric specialist from the University of Washington. We recently closed our doors and passed on the baton Rebecca’s Wish and National Pancreas Foundation.
Together, we built an educational campaign for pediatricians—to recognize early warning signs, understand the genetics, and know that surgical solutions like TP-IAT even existed.

We learned that the suffering of one family could light the path for another. And that sometimes, the only way to survive the system is to rebuild it from the outside.

The Larger Picture: A Silent Epidemic

Once considered almost unheard of in children, pancreatitis is rising sharply. Studies show annual increases in pediatric pancreatitis cases of roughly 3–4 percent over the past two decades, alongside a surge in pancreatic insufficiency and even pancreatic cancer.
In adults, both acute and chronic pancreatitis have climbed dramatically—and the condition remains drastically under-diagnosed.
The majority of people living with chronic pancreatitis have endured years of misdiagnosis, often told their pain was psychosomatic, stress-related, or simply “functional.” By the time the disease is recognized, irreversible damage has often already occurred.

Something fundamental is breaking down in how we digest food—and how we understand the organ at the center of it all: the pancreas.

The pancreas may be small, but it’s one of the body’s most vital multitaskers.
It serves two intertwined roles:

• Digestive: producing enzymes like amylase, lipase, and protease that break down carbohydrates, fats, and proteins.

• Endocrine: producing hormones like insulin and glucagon that regulate blood sugar and metabolism.

When inflammation damages this organ—as in pancreatitis—the body doesn’t just lose its ability to digest food; it also begins to lose control over blood sugar, fat metabolism, and systemic inflammation.
That’s why we’re now seeing a troubling overlap between pancreatic disease and metabolic disease—including Type 2 diabetes in children, a condition once considered strictly adult-onset.

These children are growing up in a world where their diets, environmental exposures, and stress levels overload the very systems the pancreas governs. When that delicate balance collapses, the result isn’t just diabetes—it’s the entire metabolic syndrome: obesity, insulin resistance, fatty liver disease, and chronic inflammation that ripple through every organ.

We talk constantly about nutrition but almost never about digestion.
You can give someone the most nutrient-dense meal in the world, but if their pancreas can’t release the enzymes to process it—or if inflammation blocks those pathways—it means nothing.

Severe cases like my son’s should be studied not as outliers, but as blueprints for understanding the broader crisis—the inflammation, malabsorption, and metabolic breakdown now woven into everyday life.

“You can give someone the healthiest meal in the world—but if they can’t digest it, it means nothing.”

Healing the System That Forgot How to Feed

Our story revealed the blind spots in modern medicine.
Doctors are trained to treat disease, not to nourish health.
We’ve built a healthcare system that extinguishes emergencies but ignores origins.

Families like mine are left improvising—reading labels at 2 a.m., managing pain charts, and begging specialists to talk to each other. We shouldn’t have to be the ones holding the system together.

Healing must return to its roots.
It begins with listening—to the body, to the caregiver, to the child whose pain tells a story science hasn’t yet learned to read.

Because when food becomes the enemy, it’s not just the body that’s starving—it’s the system, too.

A Final Thought

Maybe we’ve had it backward all along.
Maybe medicine has become so focused on averages and generalities that it’s lost sight of what the edge cases can teach us.
Perhaps the answers we seek won’t come from studying the “normal,” but from listening to those whose bodies reveal where human biology—and the system meant to protect it—begin to break.

It’s in these rare, fragile, and often desperate communities that we find both the warning signs and the blueprint for healing.
If we can learn from the most vulnerable, we may yet rediscover the resilience written into us all.

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About Author

Jacqueline Capriotti, the MAHA Jersey Girl, is a strategist, writer, and lifelong health advocate. She is the founder of the Victory Garden Alliance and Health Revolution USA, and the mother of two children with cystic fibrosis. Drawing on 15 years of advocacy work and direct experience navigating the medical system, she writes at the intersection of medical freedom, informed consent, chronic illness, and public health. Her mission is to give voice to patients, caregivers, and communities often overlooked in policy debates.

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For years, I didn’t have a name for what was happening to my family. I had experienced dizzy spells and fainting as a young woman, but I grew out of it—or so I thought. My mother and grandmother both had “mystery symptoms” that were never understood. Back then, there wasn’t a term like postural orthostatic tachycardia syndrome (POTS) or dysautonomia. There was only the quiet confusion that comes when your body feels like it’s betraying you, and doctors shrug their shoulders—or worse, tell you it’s imaginary.

A Mother’s Fight to Understand

When my daughter was fourteen, her symptoms hit like a storm. She had been a dancer, gymnast, and actor—full of energy and light. She was accepted into an elite performing arts program at her high school, something she had dreamed about for years. But almost as soon as the program began, her health started to collapse.

Her first class of the day was dance—her passion, her identity—and most mornings, she couldn’t even make it that far. She’d wake up dizzy, nauseous, and heavy, her body refusing to cooperate. It broke her heart to fall behind, and eventually, she had to drop out of the program completely. The loss was devastating. Her dream had been within reach, and suddenly it was gone.

What began as “maybe behavioral” or “just teenage fatigue” spiraled into daily dizziness, nausea, tingling, and near-fainting episodes. We went from doctor to doctor with no answers, until finally, at CHOP, a compassionate physician diagnosed her with postural orthostatic tachycardia syndrome (POTS)—a form of dysautonomia, a disorder of the autonomic nervous system.

When the Lights Went Out

One of the first episodes I’ll never forget happened on an ordinary afternoon. My daughter was in the shower when I suddenly heard her screaming my name—raw, panicked, and desperate. I ran in, and she was standing there, soaked and trembling, saying over and over, “I can’t see! I’m blind! I can’t see anything!”

She was looking toward me, but not at me—her eyes were wide and unfocused, like she was staring straight through me into nothingness. Then, in an instant, her body went limp.

I caught her as she collapsed, her small frame suddenly impossibly heavy, her skin cold and wet. I remember dragging her out of the shower, trying to keep her head from hitting the tile, and pulling her to her room. It felt like lifting a hundred pounds of water-soaked fabric—her body lifeless, eyes rolled back, lips pale.

She slowly came to, dazed and weak, asking what had happened. I didn’t have an answer. I had never felt so powerless in my life. That was the day I realized this wasn’t just exhaustion or dehydration. Something inside her body was breaking its own rules—her nervous system losing its rhythm.

The Autonomic System: The Body’s Hidden Regulator

The autonomic nervous system is the part of your body that runs on autopilot. It regulates your heartbeat, blood pressure, digestion, and temperature—everything that keeps you alive without conscious effort. When it malfunctions, life becomes unpredictable. Standing up can cause your heart rate to surge, your blood pressure to drop, your vision to blur, and your consciousness to slip away.

POTS isn’t rare anymore—it’s just rarely recognized. It affects an estimated 1 to 3 million Americans, predominantly young women. Yet for decades, patients were told it was “in their heads.”

Layers of Complexity

Our story is complicated by genetics. My daughter, her brother, and I all have Ehlers-Danlos Syndrome (EDS), a connective tissue disorder known to overlap with autonomic dysfunction. The fragile collagen that holds our bodies together may also affect blood vessel elasticity, worsening the dysautonomic symptoms.

When she was ten years old, just shortly after her brother, she was diagnosed with cystic fibrosis, a devastating genetic disease that affects the lungs and digestive system. Several years earlier, both children had also been diagnosed with a congenital aortic heart defect and ADHD. The diagnoses piled on—one after another—leaving little room for normal childhood worries or freedoms.

She was later diagnosed with hypersomnia—a severe disruption of sleep cycles that left her trapped between exhaustion and wakefulness. Her ability to awaken and stay awake without dizziness became unbearable. She often couldn’t get out of bed for school, and when she did, the world around her seemed to spin. Eventually, it became impossible for her to attend full-time classes, and she was placed on homebound instruction.

This wasn’t just fatigue—it was a complete system breakdown. POTS and dysautonomia are syndromes, meaning they’re not single diseases but collections of overlapping dysfunctions. The hypersomnia, dizziness, nausea, brain fog, temperature and exercise intolerance — all were interconnected, symptoms of her autonomic system struggling to maintain balance. And all of it was layered on top of her lifelong genetic disease, cystic fibrosis.

The emotional toll was just as profound. Our daughter’s frustration at simply wanting to be “a normal kid” became unbearable. Her favorite activities—dance, gymnastics, acting—slipped away one by one as her body betrayed her. Friends moved on, the world kept spinning, and she was left behind, fighting a condition most people couldn’t see or understand. The isolation that followed was as painful as the symptoms themselves.

For our family, every day felt like a new test of patience and faith. We learned to celebrate small victories—a morning without fainting, an afternoon of laughter, an evening she could stay awake through dinner. The rhythm of our lives became defined by her symptoms, yet her courage to keep trying, even when her body refused, taught us what resilience truly means.

The Fight to Reclaim Her Life

When things reached their worst, we made the decision to enroll her in an inpatient rehabilitation program at the Specialized Children’s Hospital at Robert Wood Johnson Hospital in New Jersey. She stayed there for four weeks—living, breathing, and working through a grueling schedule designed to retrain her body to function. It was one of the hardest experiences she ever faced, but it changed the trajectory of her life.

The program was intense and unlike anything we’d seen before. Every day she was pushed to her physical and emotional limits—structured routines of physical therapy, occupational therapy, strength conditioning, psychotherapy, and medical oversight. Some days began with tears and ended with small triumphs. Others ended in full-blown meltdowns—the kind of exhaustion that breaks you open before it builds you back up.

They made her move when she didn’t think she could stand. They made her run when her body screamed to stop. By the final week, she was doing burpees and sprinting down the hospital halls, the same halls she had once been wheeled through in near collapse.

It didn’t fix everything—POTS and dysautonomia rarely resolve completely—but it gave her tools, strength, and confidence to fight back. After the program, she was finally able to return to high school full-time. She graduated, regained some of her independence, and even went away to college.

That first semester wasn’t easy. The hypersomnia returned, flaring so severely that we once again found ourselves searching for answers. But this time, with the right diagnosis and medication, she found a treatment that made a drastic difference. It stabilized her sleep cycles, reduced the daily fog and dizziness, and gave her back her mornings—the simple but extraordinary gift of waking up and facing the day.

Today, she’s in her mid-twenties, with a college degree. Her cystic fibrosis and POTS remain part of her daily life—not easy, but stable. She manages, she adapts, and she thrives on her own terms.

A Trigger and a Turning Point

I’m not one to make unfounded claims. But as a mother, I can’t ignore the patterns that unfolded before my eyes. My daughter’s most severe decline began shortly after she received the HPV (Gardasil) vaccine at age 14. After the first dose, a painful lump developed in her arm that lingered for six months. After the second dose, her body changed almost overnight. Her heart raced, her vision blurred, and her once-boundless energy disappeared. She was diagnosed with POTS not long after.

At the time, I didn’t know that families around the world were reporting similar experiences—or that some had even won court cases acknowledging a connection between the HPV vaccine and autonomic disorders. I’m not claiming causation, but it raises an important truth: when someone has underlying vulnerabilities—genetic, autoimmune, or metabolic—a medical trigger can unmask or accelerate disease. That’s why transparency, tracking, and individualized care are so vital.

Years later, when she went away to college, her symptoms flared again. During her first semester, she was repeatedly revaccinated for hepatitis and meningitis after her blood titers failed to show immunity. She was given multiple rounds within a short time frame, and once again, her autonomic system destabilized. The hypersomnia returned, dizziness intensified, and she slipped back into a cycle of exhaustion and near-collapse.

These episodes may never be fully explained—but they serve as a reminder that medicine must stay humble enough to keep asking questions. Every patient is unique. What heals one person might harm another. Progress requires openness, not defensiveness.

The First Signs We Missed

Looking back, I realize her first symptoms appeared long before any vaccine, before any diagnosis—when she was just a child. She used to tug on my sleeve and say, “Mommy, I see snow.”

She said it often, describing it as tiny white static that filled her vision. We took her to eye doctors again and again, but every test came back normal. We were told there was nothing wrong with her vision. She was a bright, imaginative child, and we were encouraged to “settle on that.”

Only years later did I learn that this “visual snow” phenomenon is now recognized as a neurological symptom sometimes linked to dysautonomia, sensory processing, or migraine disorders.

As a mother, that memory stays with me—not because I could have changed it, but because I didn’t yet have the knowledge to make sense of it. The lesson I carry from that moment forward is simple but profound: listen to the patient, no matter how young. Listen to the parents, too. When something doesn’t fit the textbook, it doesn’t mean it isn’t real.

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The Weight She Carried

While her brother’s cystic fibrosis and pancreatitis demanded constant attention and crisis management, this was herbattle—one that too often unfolded in the shadows. POTS and dysautonomia don’t always bring dramatic hospitalizations or lab numbers to prove suffering, but they can dismantle a life just the same.

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In many ways, this was a war fought in parallel. As we worked to keep her brother stable, she fought daily just to stay upright, to walk, to think clearly. The two journeys overlapped, but this was hers.

Her fight taught me—and still teaches me—that the most powerful act in medicine is listening. Awareness and empathy are often the first treatments a patient ever receives.

Emerging Triggers: Long COVID, Vaccines & the Genetic Link

In recent years, researchers have documented an increase in POTS and other autonomic dysfunctions following both COVID-19 infection and, more rarely, COVID vaccination. The phenomenon is still being studied, but the link is increasingly clear: viral and immune triggers can destabilize the autonomic system.

• Studies show that POTS is one of the most common syndromes appearing in patients with long COVID.¹²³

• Case reports also document new or worsened POTS symptoms post-vaccination, particularly in individuals with pre-existing vulnerabilities.⁴

In parallel, scientists continue to study the connection between Ehlers-Danlos Syndrome and autonomic dysfunction, noting that people with hypermobility or connective tissue disorders show higher rates of dysautonomia and POTS.⁵⁶

My children have participated in some of these genetic and EDS/POTS studies, contributing to a growing body of research that may one day help prevent or treat these overlapping conditions.

Awareness Matters — It Was the Key Turning Point

Today, on the closing day of Dysautonomia Awareness Month, I reflect on how education changed everything for us.

I had not heard of POTS when my daughter was suffering. If I had not come across others sharing their stories, I doubt we would have ever found the right specialist. It’s not just about treating after the fact—it’s about recognizing the syndrome, asking the question early, and being heard.

Because when you are the parent—and you are watching your child lose her identity, her strength, her future—nothing matters more than the moment someone finally says, “I believe you.”

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Jacqueline Capriotti, the MAHA Jersey Girl, is a strategist, writer, and lifelong health advocate. She is the founder of the Victory Garden Alliance and Health Revolution USA, and the mother of two children with cystic fibrosis. Drawing on 15 years of advocacy work and direct experience navigating the medical system, she writes at the intersection of medical freedom, informed consent, chronic illness, and public health. Her mission is to give voice to patients, caregivers, and communities often overlooked in policy debates.

Resources & Further Reading

• Dysautonomia International — education, advocacy, research updates

• CHOP POTS Program — pediatric and adolescent POTS care

• Ehlers-Danlos Society — resources for EDS, HSD, and associated conditions

• NIH Clinical Trials — ongoing research into dysautonomia and EDS genetics

Footnotes / Citations

• POTS affects an estimated 1–3 million Americans, most of them young women (Dysautonomia International; Cleveland Clinic).

• The condition was formally characterized in the 1990s but is now recognized as a common form of autonomic dysfunction (Raj et al., Circulation, 2013).

• Researchers have identified autoimmune and genetic components in subsets of patients (Vernino et al., Journal of the American Heart Association, 2018).

• Long COVID has led to a documented rise in POTS and related dysautonomias (Dani et al., Clinical Medicine (London), 2021; Miglis et al., Heart Rhythm, 2022).

• A small number of studies and case reports have explored POTS or autonomic reactions following certain vaccines, including HPV and COVID, particularly in individuals with preexisting vulnerabilities (Blitshteyn & Brinth, Immunologic Research, 2017).

• Ehlers-Danlos Syndrome (EDS) and POTS frequently coexist, suggesting a connective-tissue and circulatory link (Hakim et al., American Journal of Medical Genetics Part C, 2015).

• October is officially recognized as Dysautonomia Awareness Month, encouraging education, advocacy, and research (Dysautonomia International).

Sometimes I feel like I am perceived as a burden — not because I seek attention, but because my experience doesn’t fit into the world’s tidy narratives. People don’t always know what to do with someone like me: a mother whose life has revolved around hospitals, medication schedules, and the quiet heroism of simply surviving another day.

Before the Pandemic

Before Covid, I had already lived two decades inside a world that most people cannot imagine. From the moment my children were born, my husband and I searched for answers that no one seemed to want to find.

For years, we were dismissed — told we were overreacting, that we were anxious, that we were “pushing too hard.”

It took fourteen years for our son to be diagnosed with a life-threatening progressive disease. Soon after, our ten-year-old daughter was diagnosed with the same condition. Even then, mistakes and assumptions followed us everywhere.

“It took fourteen years for our son to be diagnosed. Ten for our daughter. By then, I had learned how to speak a language no parent should ever need to learn — persistence.”

We learned to advocate fiercely, to study the science ourselves, to keep pushing even when the professionals told us not to. That journey humbled me. It made me realize how profoundly human everyone in medicine really is — the doctors perched on pedestals, the nurses who keep the system running, the scientists whose brilliance has, time and again, saved my children’s lives.

The truth is complicated: I owe my children’s survival to modern medicine, yet I have also seen how its structures can wound, dismiss, or ignore those who need it most. I have celebrated the breakthroughs that have added decades to my children’s lives — and still, I call out where the system must evolve.

Many of my friends in the MAHA world fight courageously for health reform and personal freedom, and they’ve found kinship with me because they know how deeply I care. But few truly understand the other side of my story — the part that has lived within hospital walls and owes its hope to the very system they often distrust. Maybe that understanding will come with time.

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When the World Stopped

When Covid hit, that fragile balance collapsed. My daughter Emily was hospitalized with a lung infection from an unknown virus during those first two weeks when the pandemic broke out. While the world was learning the word lockdown, we were already living it.

We were the first shelter-in-place before anyone told us to.

Every month, a visiting nurse would come to our home to maintain my son’s port-a-cath and a multitude of health issues. Those visits were terrifying. We’d joke and laugh and call ourselves the Michelin Men, dressing head-to-toe in layers of protection just to survive another procedure. Beneath the laughter was raw fear — fear that one careless breath could end everything.

We didn’t emerge from our home for over a year. And while the world outside was tearing itself apart, turning neighbor against neighbor in a war of words and ideology, we — the vulnerable ones — were forgotten.

“They said they were protecting us, but no one called to see if we were okay.”

Businesses were shut down, livelihoods destroyed, and communities divided in the name of “protecting people like us.”
We became the faceless poster family — the children and mother and father everyone said they were sacrificing for. Yet no one checked on us. No one called. They spoke of protecting the vulnerable while never speaking to the vulnerable. The world made symbols of us, not neighbors.

They closed their shops, lost their jobs, and pointed to families like mine as the reason — we must protect that woman’s children — but they never knew our names.

And yet, even in that isolation, light broke through. My best friend Sue — whose daughter also lives with a lifelong immune condition — became my lifeline to the outside world. She understood every fear before I had to speak it. And my dearest friend Lesa, whose beloved daughter had passed from the same disease that my children battle, carried wisdom the rest of us didn’t yet have — the weight of what was truly at stake. That text group grew to 5 of us.

“In a time when the world disconnected, friendship became our form of survival.”

Together, we texted every day. We prayed, laughed, shared small victories and quiet breakdowns. Those threads of friendship — digital but deeply human — held me together when everything else fell apart.
We still text every single day and now can be together in person.

And through it all, I believe there was a plan. Maybe God was still gardening — pulling weeds and sowing seeds where no one else was looking.

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The Weed’s Wisdom

I think of Martha Martin’s poem The Weed’s Philosophy:

“If of evil and suffering the world still has need,
In its path of development, then I, a weed,
Must form part of that plan which in Nature I read,
Though I live but to die just for being — a weed.”

Perhaps I, too, am a weed — growing in the cracks of a system that doesn’t quite know what to do with me.
Weeds are resilient. They grow where they are told they shouldn’t. They survive droughts, storms, and neglect.

“Maybe the weeds were never the problem. Maybe we were the proof that life persists.”

Maybe that’s the point. Maybe the weeds were never the problem. Maybe we were the proof that life persists — uninvited, uncelebrated, yet utterly essential.

So I will keep growing. Not as a burden, not as an outcast, but as a reminder of what endures when the world forgets: that healing and hope often bloom from the hardest soil.

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About the Author

Jacqueline Capriotti, the MAHA Jersey Girl, is a strategist, writer, and lifelong health advocate. She is the founder of the Victory Garden Alliance and Health Revolution USA, and the mother of two children with cystic fibrosis. Drawing on 15 years of advocacy work and direct experience navigating the medical system, she writes at the intersection of medical freedom, informed consent, chronic illness, and public health. Her mission is to give voice to patients, caregivers, and communities often overlooked in policy debates.

By Jacqueline Capriotti
Founder, Make America (New Jersey) Healthy Again Coalition
Health Revolution USA | Victory Garden Alliance

As a New Jersey mom who has spent years navigating the healthcare system for my children with chronic illness, I’ve seen both the best and the worst of what our state can offer. It’s time to rebuild a system rooted in compassion, accountability, and common sense — one that truly puts families and patients first.

For too long, the political conversation around healthcare has focused on who pays for it, rather than what we’re actually paying for.

The truth is, coverage isn’t care.

While coverage matters — I know this personally, as a mother whose children depend on complex medical systems to survive — coverage alone doesn’t create better outcomes. Healthcare is about care: about results, relationships, listening, and trust.

And right now, something in that equation is broken.

A State That Once Led in Health Innovation

New Jersey once led the world in public health innovation. From Bell Labs and Rutgers University to Johnson & Johnson’s early public health breakthroughs, this state helped define what modern healthcare looked like.

We pioneered sanitation systems, hospital design, and pharmaceutical research that changed global standards. Yet somewhere along the way, we began measuring success by access rather than outcomes — by bureaucratic boxes checked rather than lives transformed.

We built more systems, more programs, more paperwork — but not better health.

Today, we find ourselves at a crossroads: a state rich in medical innovation, yet struggling with some of the worst health outcomes in the developed world. That’s right; right here in New Jersey.

The Chronic Illness and Public Health Crisis

New Jersey has some of the most advanced research institutions and hospitals on earth — Princeton, Rutgers, Robert Wood Johnson, Hackensack Meridian, Cooper, Atlantic Health. To add we have short access to CHOP, University of Philadelphia, Jefferson, Temple, NYU, Mt. Sinai, Deborah Heart Center, Sloan Kettering and Columbia to name a few. But despite these assets, we rank among the highest globally in maternal & infant mortality, chronic illness - pediatric and adult, autism prevalence, and COVID-19 deaths per capita.

We are living through a chronic illness epidemic — a silent pandemic of inflammation, stress, toxicity, and disconnection.
Half of American adults live with at least one chronic condition; one in four has two or more. 40% of children in US have at least one health condition. This isn’t just a healthcare crisis — it’s a cultural one.

Our medical system, food, air, soil, and stress levels are all contributing to a collapse of resilience. We are surrounded by abundance yet starved for vitality.
If access alone were the solution, we’d already be the healthiest state in America. Clearly, something deeper is wrong.

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A Hidden National Treasure: New Jersey’s Pediatric Chronic Illness Leadership

Few realize that New Jersey is home to the nation’s only inpatient and outpatient pediatric chronic illness program— located at Robert Wood Johnson Health’s Children’s Specialized Hospital. It’s truly a diamond in the rough, I know this personally as my son and daughter were former patients there.

This program serves families from across the country and around the world. It treats not just the medical aspects of chronic illness, but the mental health, family systems, and educational impacts that come with it. It’s a model of what compassionate, comprehensive care can look like when a system commits to the whole child and whole family. Just imagine if we invested energy, and thoughtful study to create a model right here in NJ for the country.

Imagine the possibilities if we expanded on that model — not just for children, but for adults with complex chronic conditions.
New Jersey could lead the nation in reimagining what coordinated, long-term care and lifestyle change really means.

We also have a growing community of independent physicians, osteopathic doctors (DOs), and integrative and alternative health providers who are courageously working outside traditional systems to offer more personalized, preventive care.

But for these innovators to thrive — and to prove their worth through research and accessibility — they need policy support and institutional cooperation. We need legislation that encourages cross-collaboration, allows insurance reimbursement for integrative care, and funds outcome-based studies that validate what so many patients already know: that holistic, personalized approaches often heal where conventional systems fall short.

If New Jersey embraces this diversity in healing — from cutting-edge medical programs to natural and integrative care — we could become the national epicenter for a new era of whole-person health.

Listening to Patients, Not Silencing Them

Real reform begins with humility — and with listening. Too many patients and parents have felt abandoned, silenced, or even censored when they’ve tried to share their experiences.

Many have been accused of spreading misinformation or disinformation when, in truth, they were desperately searching for answers — trying to understand why they were sick, or why their child reacted differently than expected.

As a mother who has walked hospital halls more times than I can count, I’ve felt that quiet humiliation of not being heard — of being told that what I observed wasn’t real because it didn’t fit the chart. It took 14 years for my son, and 10 for our daughter to be diagnosed with cystic fibrosis despite the early symptoms we continually pointed out to their pediatricians. A true betrayal and abandonment. That disconnect between data and reality is where trust dies.

Public health must remember that science without listening is not science — it’s control.
Healing starts when we listen to those who’ve lived through it.

Protecting Children’s Mental and Emotional Health

We must also protect the mental and emotional health of our children. That begins by giving parents a central role in guiding when and how kids are exposed to the complexities of the world — not outsourcing that to state institutions.

Healthy development means balance: gradual exposure, honest conversation, and respect for family values. Parents deserve to be the primary decision-makers in their children’s mental and emotional well-being.

When public health forgets that parents are partners — not obstacles — trust breaks down at the most personal level.

Building Real Accountability and Transparency

Healthcare reform must go beyond cost and coverage. We need accountability — for insurers, for public agencies, and for systems that profit while families suffer.

That means eliminating loopholes that allow insurers to delay or deny claims, expanding access to commercial plans, ensuring pre-existing conditions are always covered, and demanding transparent pricing and outcomes reporting.

Families pay faithfully into the system. It’s time for the system to deliver faithfully back.

True reform also means confronting our failures honestly — learning from what worked and what didn’t during COVID.
We must study effective mitigation in public health — not through political lenses, but through real-world data and humility. Lockdowns, school closures, and mandates may have been well-intentioned, but did they hurt more than help? Did they harm in ways we still don’t fully understand and are still impacting New Jersyans?

If we want better outcomes next time, we have to be brave enough to ask those questions now.

Investing in Community Health and True Prevention

Health doesn’t begin in the hospital. It begins at home — in our gardens, our kitchens, our communities.

We need to redirect focus and funding toward community-based clinics, preventive care, and real food-based health solutions.
This includes supporting clinics that serve the uninsured and working poor, empowering local wellness programs, and integrating mental health and nutrition into every level of care.

Imagine a New Jersey where every town has a Community Health Garden, a local wellness hub, or a school-based nutrition initiative — where prevention is visible, practical, and communal. Many New Jersey communities are doing this already, we must partner and learn how we can empower them to fulfill their righteous missions.

These are small, local acts of public health that have enormous ripple effects.

Food Is Medicine: The Garden State Advantage

There’s a reason New Jersey is called The Garden State — and that title holds the key to our future.

From Salem County to Sussex, our small farms, local markets, and family-owned food producers are already laying the groundwork for a true “Food Is Medicine” movement. Across the state, farmers’ markets are thriving, consumers are seeking out organic and regenerative products, and young families are rediscovering the connection between soil health and human health. Yet too many of our Garden State farms are closing down and selling due to over regulation, which stands in their way of the right to farm and Make NJ Healthy.

If we embrace this moment, New Jersey could lead the nation in building a localized, regenerative food-health system that reconnects what we grow with how we heal.

This means incentivizing local hospitals and clinics to partner with nearby farms and co-ops; integrating food prescriptions into chronic disease care; and expanding access to fresh, local produce in underserved communities.

Imagine if Medicaid and private insurers reimbursed a portion of “food prescriptions” — CSA shares, farmers’ market produce, or cooking classes for chronic illness prevention. That’s not a dream; it’s already being tested successfully in other states. This leads to healthier outcomes, better quality of life, less strain on the medical systems and state budgets.

By building stronger partnerships between public health and local food producers, we could create a model where the Garden State truly lives up to its name — nourishing both the body and the economy.

This is health reform at its roots.

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Restoring Trust Between Families and Government

Medical freedom and parental rights must never be negotiable.
They are the foundation of both trust in public health and the stability of our society. Families deserve full transparency, informed consent, and the right to make health decisions guided by their own values, faith, and conscience.

That means protecting medical, religious, and philosophical exemptions and establishing a Parental Rights Ombudsman within state government — a dedicated advocate whose sole purpose is to ensure that parents have a real voice when health, education, and public policy decisions affect their children.

An Ombudsman can serve as the connective tissue between families and institutions — mediating disputes, investigating complaints, and safeguarding due process for those who feel ignored or pressured by systems that were meant to serve them. It’s one of the simplest and most effective ways to begin rebuilding trust.

Because public health only works when people trust it.

And trust is earned through honesty, humility, and participation — not coercion or censorship.

We must restore that trust by respecting parental authority, encouraging open dialogue, and ending the culture of fear that has divided patients and practitioners alike.

We need leaders who are willing to learn — from their own mistakes, from the mistakes of COVID, and from the failures of inflated bureaucracy and misunderstanding. Real leadership doesn’t deny errors; it learns from them. That humility is how we begin to heal — not just our systems, but our collective faith in them.

Public health must become participatory again — not something done to people, but something done with them. The future of health is relational, not regulatory.
We don’t rebuild trust through mandates.
We rebuild it through conversation, consent, and community.

A Path Forward: What Real Reform Looks Like

New Jersey has the resources and heart to lead the nation again in health reform.
Here’s what that could look like:

• A State Task Force on Chronic Illness Prevention and Food Systems — uniting agriculture, medicine, and nutrition.

• Community Health Agriculture Programs — linking local farms, schools, and clinics through initiatives like Victory Garden 250.

• A Parental Rights and Public Health Advisory Council — to ensure families have a seat at the table in state health decisions.

• Transparency in Post-Market Monitoring and Patient Safety Reporting — learning from every adverse event or treatment outcome.

• Nurse- and faith-led Local Wellness Hubs — providing preventive care, screenings, and connection in every county.

This is how we shift from a sick-care system to a true health system.

A Health System Rooted in Humanity

What New Jersey needs now is more than another healthcare plan. We need a healthcare renewal — one that puts people before politics, and compassion before control.

Our path forward is clear:
Listen. Empower. Reform. Restore.

This is how we make New Jersey — and America — healthy again.

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About the Author

Jacqueline Capriotti, the MAHA Jersey Girl, is a strategist, writer, and lifelong health advocate. She is the founder of the Victory Garden Alliance and Health Revolution USA, and the mother of two children with cystic fibrosis. Drawing on 15 years of advocacy work and direct experience navigating the medical system, she writes at the intersection of medical freedom, informed consent, chronic illness, and public health. Her mission is to give voice to patients, caregivers, and communities often overlooked in policy debates.

“The garden is not only a place of growth, but of grace.”
— Jacqueline Capriotti, Victory Garden 250

The Soil Remembers

There was a time when America knelt to the earth.
In backyards and schoolyards, on church lawns and city rooftops, the sound of shovels striking soil echoed through the 1940s — a chorus of hands answering the call of the Victory Garden. These were not farmers by trade, but citizens by spirit. They grew because their country asked them to, because their neighbors needed them to, and because somewhere deep in their hearts, they felt that sacred whisper — the earth will provide, if you will love her well.

It was a movement as humble as it was holy.

A Nation in Communion

The great secret of the Victory Garden campaign was not just the food it produced, but the communion it created.
Federal agencies, state colleges, local schools, and families all became one extended table — breaking bread together across miles and class lines.

The U.S. Department of Agriculture coordinated the vision; Extension agents fanned out like missionaries of the soil, teaching and tending. Churches and synagogues lent their land. Schools grew vegetables beside playgrounds. Civic clubs, women’s guilds, and canning co-ops became sanctuaries of service.

It was government and community not at odds, but in harmony — a nation practicing what St. Francis once preached: “For it is in giving that we receive.”

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The Cooperative Spirit

In towns and cities alike, the humble co-op became a cathedral of cooperation.
Here, the tools of fellowship were shovels and seed packets, shared fertilizer and jars of canned beans. Women gathered in canning kitchens — steam rising like incense — sealing not only vegetables but the hope of a nation. Children carried baskets door to door, trading cucumbers for carrots, laughter for lessons.

Each exchange was an act of faith, a quiet promise that the work of one could nourish the many.
They called it patriotism.
But perhaps, without naming it, they were tending something holier — a living liturgy of care.

A Wartime Miracle: The Fenway Victory Gardens

In the heart of Boston, one such miracle of cooperation took root.
In 1942, the city transformed 49 acres of parkland in the Fenway neighborhood into a patchwork of nearly 3,000 Victory Gardens—each tended by ordinary citizens. Students, shopkeepers, immigrants, clergy, and veterans worked side by side, growing food for their families and for the war effort.

By harvest season, the Fenway gardeners had produced over 2,000 tons of vegetables, feeding tens of thousands of Bostonians and donating surpluses to hospitals and relief kitchens. Newspapers called it “Boston’s miracle of the soil.”

Today, the Fenway Victory Gardens remain the oldest continuously cultivated Victory Gardens in the United States, protected within Boston’s Emerald Necklace park system. What began as wartime necessity has endured as an urban oasis of community resilience, tended by more than 500 gardeners representing over 30 countries. Visitors still wander through the rows of beans and dahlias, witnessing the living legacy of America’s home-front harvest.

Yet even this enduring garden could restore its roots further — renewing its mission as a teaching ground for health, sustainability, and local food resilience. Imagine Fenway once more partnering with schools, local farms, and churches — reviving its founding spirit not as a relic, but as a beacon for the Victory Garden 250 era: a living classroom of democracy, stewardship, and shared grace.

A New War on Illness and Inequality

If the 1940s were marked by a war for freedom, today’s battle is for wellness.
America faces a chronic illness epidemic unlike any in history — fueled not by scarcity, but by a famine of access to healthy food. Across our nation, food deserts stretch where farms once flourished. Many of our most abandoned communities live without fresh produce, clean soil, or nutritional education.

This is the new front line — a war not fought with weapons, but with seeds, shovels, and collective will.
The movement for regenerative agriculture, faith-based sustainability, and community food systems is how we win it: by restoring access, dignity, and vitality through the soil beneath our feet.
The Victory Garden 250 campaign carries this mission forward — from coast to coast, uniting gardeners, farmers, and families to heal both body and nation.

Seeds for a New Generation

Church gardens are blooming again; schools are teaching that food is medicine; local farmers markets hum with life; community co-ops trade abundance instead of scarcity. These are the green shoots of renewal — our modern monasteries of mindfulness.

And here, in the Garden State, we see this revival already taking root.
In my home county of Monmouth, New Jersey, Interfaith Neighbors, NOFA NJ partner has built a living model of cooperation through its Community Food Connection. What began as a hunger-relief effort has become a county-wide coalition linking local farms, faith centers, and distribution sites. Through their Farm to Families initiative, fresh produce from New Jersey farms is delivered weekly to dozens of pantries, schools, and senior centers — a modern echo of the 1940s co-ops where faith and farming met at the same table.

Meanwhile, across the country, Victory Garden 250 Ambassador Erin Martin is leading a kindred movement through FreshRx Oklahoma, a USDA-funded “food-as-medicine” initiative that partners with local farmers to supply nutritious produce to people with diabetes and food insecurity. Her work has improved health outcomes, strengthened small farms, and demonstrated that a just food system begins with dignity, not dependency.

Franciscan Earthcare: Stewardship in Action

The call of St. Francis — to cherish creation and serve the poor — lives on through modern partners like the Franciscan Earthcare Initiative, a proud collaborator of the Victory Garden Alliance.
In schools and parishes across Kentucky and Indiana, Franciscan Earthcare is guiding students and congregations to plant school and community gardens that nourish both body and soul. Children learn where food comes from, how soil breathes, and why feeding others is a sacred act.

Their gardens are not simply lessons in botany — they are living classrooms of compassion. Every carrot pulled, every hand that waters, becomes a small prayer: a recognition that tending the earth is tending each other.
This is the spiritual continuity of the original Victory Garden movement — faith in action, one seed at a time.

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Breaking Bread Once More

As we approach America’s 250th anniversary, may we look again to that living gospel of soil and service.
Let our hands return to the ground. Let our tables open to neighbors. Let the nation rediscover that peace is not a policy, but a practice — one that begins in the garden.The Victory Garden movement once fed a nation through faith and fellowship.
Now, a new generation is being called to do the same — to plant not only seeds, but hope; to cultivate not only gardens, but grace.

For when we break bread together again, we rebuild not just our bodies, but our belonging.
And perhaps, in the gentle rhythm of that work, the spirit of St. Francis walks among us once more — blessing every furrow, every harvest, every heart that turns toward the sun.

Help Us Build the Map of America’s New Victory Gardens

We cannot do this alone. Across the nation, thousands are already sowing the seeds of renewal — from local farmers markets and co-ops, to school and church gardens, community plots, veteran farms, CSA programs, wellness gardens, and farm-to-table education projects. We are creating a national Victory Garden 250 Map — a living tapestry of faith, food, and fellowship.

If you are growing, teaching, feeding, organizing, or nourishing your community, we invite you to be part of it.

📍 Add your project to the map
(Use the form linked below — share your story, your soil, and your hope.)

»»»»CLICK HERE«««««

Together, we can replant the roots of America — one seed, one table, one act of love at a time.

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About the Author

Jacqueline Capriotti, the MAHA Jersey Girl, is a strategist, writer, and lifelong health advocate. She is the founder of the Victory Garden Alliance and Health Revolution USA, and the mother of two children with cystic fibrosis. Drawing on 15 years of advocacy work and direct experience navigating the medical system, she writes at the intersection of medical freedom, informed consent, chronic illness, and public health. Her mission is to give voice to patients, caregivers, and communities often overlooked in policy debates.