He survived. And in this episode of Advocacy at Work, he shares the parts of that story nobody talks about: describing his first MRI as a Christmas tree lit up with tumors, the isolation that hit when the phone calls stopped after he was declared cancer-free, and the mirror moment that pushed a self-described hermit onto Capitol Hill.

We talk about:

• The warning signs he ignored — and the misdiagnosis that cost him more time

• Why survivorship can be as isolating as diagnosis

• His push for endoscopy screening guidelines for stomach cancer

• H. pylori: the detectable, curable bacterium most people don’t know they have

• How answering one Facebook message at 8:30 PM became the most rewarding part of his advocacy

Connect with Andy:
Hope for Stomach Cancer: https://stocan.org

Man Up to Cancer: https://manuptocancer.org

Debbie’s Dream Foundation: https://debbiesdream.org

Andy’s YouTube: https://www.youtube.com/c/AGoodTimesProductions

📬 Read the full story and subscribe: https://www.advocacyatwork.com/p/the-second-chance

#StomachCancer #EarlyDetection #CancerSurvivor #PatientAdvocacy #HPylori #AdvocacyAtWork

Every week I get to do something that genuinely fills me up: stop and name the people who are out there doing the work. Not the press releases. Not the polished campaigns. The real, gritty, meaningful work of showing up in rooms that weren’t always built for us, and changing what happens inside them. This is Vol. 6 of Advocacy at Work’s weekly advocate spotlight, and I’m especially proud of the three people I’m highlighting this week. Each of them is operating at the intersection of community, policy, and lived experience in a way that reminds me exactly why this work matters. Let’s get into it.

Deondre Williams LinkedIn

When the U.S. Preventive Services Task Force lowered the recommended colorectal cancer screening age to 45, the headlines celebrated it as a win. And in many ways, it was. But Deondre Williams has been asking the harder question: a win for whom?

Deondre was selected as a mainstage speaker at Equity in GI 2026 in Washington, D.C., where he presented on “The Untold Equity Story Behind the Age 45 CRC Screening Shift: Too Young, Too Late in Black Communities.” That title alone should stop you in your tracks. Because the data is clear — Black Americans are diagnosed with colorectal cancer at younger ages and die from it at higher rates. A policy shift that doesn’t account for that reality isn’t just incomplete; it’s dangerous.

Deondre is doing what the best advocates do: he’s not letting a policy win become a distraction from a deeper inequity. He’s taking that tension to a mainstage audience in the nation’s capital, speaking truth with evidence and urgency. That’s courage. That’s advocacy. I am so proud to see him in that room.

Mila Ogalla Toledo LinkedIn

There’s a phrase that gets thrown around in advocacy circles: “nothing about us without us.” Mila Ogalla Toledo isn’t just saying it, she’s living it.

A patient advocate and EUPATI Fellow, Mila spoke on a panel at ESMO GI 2026 in Munich alongside Digestive Cancers Europe, reflecting on what it actually means to be in the rooms where decisions about patients get made. Those rooms — the oncology conferences, the clinical policy discussions, the European regulatory conversations — have historically been filled with clinicians, researchers, and industry representatives. The patient voice has often been an afterthought, if it was invited at all.

What struck me about Mila’s moment is how she framed it: not just as an achievement, but as a reflection. She’s thinking critically about presence and power, about what it means to be at the table and whether the table itself is set up to actually hear you. That kind of self-aware advocacy is rare and it’s powerful. Mila is building a blueprint for what meaningful patient inclusion looks like in European oncology spaces, and I’m watching with deep admiration.

Rachel Bhagwat LinkedIn

Sometimes advocacy looks like a protest sign. Sometimes it looks like a job title that didn’t exist before you helped make the case for it.

Rachel Bhagwat was just named Deputy Director of Cross-Systems Advocacy at the County Behavioral Health Directors Association (CBHDA) — a newly created role focused on some of the most complex and contested terrain in behavioral health policy: involuntary treatment, CARE Court, and criminal court processes. These are not easy issues. They sit at the crossroads of mental health, civil rights, housing, and the criminal legal system, and they affect some of the most vulnerable and underserved people in our communities.

The fact that CBHDA created this role, and that Rachel is the one stepping into it, tells me that the advocacy community is starting to recognize that cross-systems thinking isn’t optional anymore. Rachel brings the kind of nuanced, policy-grounded perspective that these conversations desperately need. This is a big deal, and I don’t want it to get lost in the feed. Congratulations, Rachel.

That’s Vol. 6. Three advocates. Three different arenas. One common thread: they showed up, they spoke up, and they made the work better for everyone who comes after them.

If this landed with you, please subscribe so you never miss a spotlight. And if you know someone doing advocacy work that deserves to be named — in health, behavioral health, policy, community organizing, wherever — nominate them for next week. Hit reply or click the nomination link. These folks deserve to be seen.

It started on a vacation to Miami Beach in 2020.

As early as 2018, Andy Goodspeed noticed something was off. Severe heartburn. Stomach cramping. General fatigue. Back pain that seemed to come out of nowhere, shooting up and down his spine. But being a man in his fifties with a career in the restaurant industry, he did what so many of us do: he ignored it.

“It’s just getting old,” he told himself. “It’s just the job.”

Then 2020 happened. COVID was spreading. Going to the doctor seemed like a bad idea. So Andy kept pushing the symptoms aside, self-medicating with over-the-counter Advil, keeping his local pharmacy well-stocked and unaware that every month that passed was potentially costing him years of his life.

By early 2021, nearly three years after his first symptoms, his wife finally convinced him to see a doctor. What came next was a diagnostic journey that would change everything: a misdiagnosis, worsening symptoms, falling asleep while standing at his restaurant job, more blood tests, and finally, the endoscopy that revealed the truth.

A large ulcer. One inch across. Perforated through the stomach wall. Cancer positive.

Then came the MRI. And that’s when Andy’s life fractured into before and after.

The Christmas Tree Moment

Andy describes his first cancer scan in a way that will stay with me.

“If you look at a Christmas tree on Christmas morning,” he says, “you see all those nice little presents and all those nice bright lights on the Christmas tree, and it’s sparkly and it’s magical. That’s what I saw. But unfortunately, it was on my MRI scan.”

The lights on that scan weren’t magical ornaments. They were tumors. Ninety percent of his bones showed evidence of cancer. There were tumors in his lymph nodes. In his liver.

He had stage four gastric cancer. He had been given six months to live.

He remembers his wife crying. The nurse crying—though she tried to hide it. The out-of-body experience of hearing those words. And his joy of Christmas, from that moment forward, was tied to the image of his own body lit up with cancer.

Three Years of Missing It: Why Early Detection Matters

Here’s the thing that haunts Andy, and what’s driving his advocacy work: he ignored symptoms for nearly three years before he saw a doctor.

Three years.

And here’s the cruelest part: when he finally went to the doctor, even the medical system didn’t immediately suspect cancer. He was diagnosed with heart angina. Put on three different heart medications. His symptoms got worse—chest pain, back pain, stomach pain, debilitating fatigue—but the doctors kept looking everywhere except the right place.

It wasn’t until blood tests revealed he was severely anemic that the pieces started to come together. Even then, it took an endoscopy to find the ulcer that was actually cancer.

“I probably ignored the symptoms for three years when I finally got to a doctor,” Andy reflects. “It was not misdiagnosed, but it was diagnosed later than it probably should have been.”

He’s convinced—and he’s likely right—that if he’d caught this earlier, he would have been diagnosed at stage one instead of stage four. His entire cancer journey would have been different. His odds of survival would have been different.

The Unexpected Survival: When Your Second Chance Scares You

After two and a half years of chemotherapy and immunotherapy, something miraculous happened: Andy’s cancer responded. In August 2023, he was declared NED—no evidence of disease. The man who had been given six months to live had beaten stage four cancer.

But here’s something nobody talks about: being told you’re going to survive when you’ve spent two years preparing to die is its own kind of trauma.

“I had spent a couple of years basically preparing to die and trying to get all my affairs together and make sure my wife was taken care of,” he says. “And then lo and behold, I had the best surprise of my life and was told that I no longer had any evidence of disease.”

The joy should have been complete. But then came the isolation.

“When I got the news that I was NED for the first month or so, I was just on top of the world,” Andy recalls. “And then after that first month, all those phone calls stop. All the people that were checking in on you when you had cancer, that all stops and suddenly you feel very isolated. Survivorship as happy as it can be, can also be extremely isolating and depressing.”

Those calls had been his lifeline. His community. And suddenly, they were gone. The world that had been supporting him through his darkest hours moved on to the next person, the next crisis. And Andy was left standing alone, trying to figure out what to do with a second chance he never expected to get.

The Mirror Moment: You Can’t Waste This

That’s when Andy had a moment of clarity. Standing in front of the mirror, he asked himself a hard question: Are you really going to waste this?

“You can’t waste this opportunity,” he told himself. “You can’t sit on your ass and your sofa and watch Guy’s Grocery Games all day long. You got to do something with a second opportunity. You owe it to everybody to do something with your survivorship.”

Five months after being declared NED, Andy attended his first advocacy event: a stomach cancer conference in Washington, DC. He was invited by Hope for Stomach Cancer—an organization his wife had found for him in the early days of his diagnosis when he was searching desperately for information and community online.

He didn’t plan on doing advocacy work. He certainly didn’t plan on returning to Capitol Hill year after year. But that first experience in DC lit a fire under him.

“The first year I will admit that we got probably literally nothing accomplished and it set a fire under me,” he says. “It’s like we got to keep pushing these people, these senators and these congress people to get better research and better funding and things like that.”

From Deer in Headlights to Effective Advocate

Andy’s first trip to Capitol Hill was overwhelming. He describes himself as a “deer in headlights” running from Congress building to Congress building, trying to find his way, intimidated by the enormity of it all and the people he was meeting.

But he kept showing up. He practiced his public speaking. He learned the ins and outs of advocacy. And he got better.

“I think as far as my advocacy journey goes, it’s pretty simple. Just practice, practice, practice. And you get better as you do it and you get more comfortable as you do it like anything,” he says.

Here’s what’s remarkable: Andy describes himself as someone who dislikes public speaking. Someone who would “easily be a hermit.” But the advocacy work has changed him.

“Because of the advocacy work, I’m forced to get out of my comfort zone, you might say, and talk to these senators and their staff members and get out in front of groups of people and do talks and things like that. So I think it’s definitely brought a part of me out that I enjoy and that I’m proud of.”

He’s not comfortable with it. But he does it anyway. Because he has a second chance and he refuses to waste it.

The Advocacy Goal: Early Detection for Stomach Cancer

So what is Andy actually fighting for on Capitol Hill?

The Early Prevention and Detection Act for stomach cancer. Specifically, he wants mandatory endoscopy guidelines for stomach cancer—the same way colonoscopies are mandatory for colorectal cancer every few years.

“I’d like to see a mandatory endoscopy for stomach cancer every three years like you do with colon cancer as far as your colonoscopies go,” he says. “So if we could get some federal mandates such as those things, I think it could cure or prevent a lot of the cancer situations.”

But there’s another piece to his advocacy that’s less visible but equally critical: educating people about H. Pylori.

H. Pylori is a bacterium that’s a known precursor for stomach cancer. It’s easily detectable and easily curable with simple antibiotics you can get at any pharmacy. But most people don’t know they have it. And if it goes undetected, it stays in your body and potentially leads to cancer.

“If it goes undetected and you never know you had it, then it stays inside your body and eventually, at least 80% of patients that had h pylori could potentially get stomach cancer later on in life,” Andy explains.

The medical world has no guidelines to screen for it. And because of that, countless people are walking around with a ticking time bomb inside them, completely unaware.

The Unexpected Gift: Community and Connection

Here’s something that cancer took from Andy: his old life. His career trajectory. His certainty about the future. His ability to enjoy Christmas without seeing tumors.

But here’s what cancer gave him back: a community. A purpose. Friendships that started online and became lifelong bonds.

“I wouldn’t have met all of these great people on Man Up to Cancer and Hope for Stomach Cancer if I didn’t have cancer to start with, and I wouldn’t be doing this work if I’d never had cancer,” he reflects. “I’d still be working in the restaurant industry and probably complaining that my feet hurt and complaining about the customers and things like this.”

One of the most beautiful parts of his advocacy work has been the direct connections with other patients and survivors. Someone messages him on Facebook at 8:30 PM while he’s watching TV, asking questions about their journey. He responds. It takes five minutes. But it might save that person from feeling completely alone.

Those connections—made through Man Up to Cancer, Hope for Stomach Cancer, Debbie’s Dream Foundation—have become the fabric of his new life. More meaningful, in many ways, than his old one.

What It Takes: Showing Up When You’re Uncomfortable

Andy makes a point I think every prospective advocate needs to hear:

“A lot of people that are uncomfortable talking in the end would find it pretty enjoyable like I did,” he says. “I encourage people to experience and to try out a little bit of advocacy.”

He wasn’t a natural public speaker. He wasn’t looking for the spotlight. He would have been perfectly content to stay in his comfort zone. But he knew he had something to offer—his story, his experience, his hard-won knowledge about what it means to miss the warning signs.

And so he got uncomfortable. Over and over again. He went to conferences. He talked to senators. He shared his story with strangers. And each time, he got a little braver. A little better. A little more convinced that it was worth doing.

The Power of One-on-One

Near the end of our conversation, Andy and I talked about what actually drives advocates. It’s not the big legislative victories (though those matter). It’s the personal connections.

“It’s very fulfilling and it’s easy having, it’s easy to answer a question on Facebook. It doesn’t take much time,” Andy says. “And that’s how you make connections too. I mean, I’ve made lifelong friends just by Facebook Messenger. You talk to these people over messenger, you go to these conferences in dc, these advocacy weekends, and you can put the face with the online messages and you’ve made lifelong friends then.”

One of the most striking things about talking to advocates is how often they say the same thing: the greatest reward isn’t the policy change. It’s the message from someone who felt alone and suddenly didn’t. It’s the person who got screened because they heard your story and decided not to ignore the warning signs like you did.

That’s the real work. That’s what keeps people like Andy coming back year after year, getting uncomfortable, staying committed, using their second chance.

Connect With Andy

If you want to learn more about stomach cancer or reach out to Andy:

• Hope for Stomach Cancer: stocan.org (where Andy is an active member and speaker)

• Man Up to Cancer: Andy.goodspeed@manuptocancer.org, also on the Circle app

• Debbie’s Dream Foundation: Another stomach cancer advocacy organization

• YouTube: AGoodTimes Productions (Andy’s channel where he shares his journey and travel content with his wife)

• Facebook: Andy is active and responsive to messages

• Imerman Angels - mentor for the peer to peer support group

• Hospice Volunteers of Somerset County Maine - Hospice Volunteer

If you’re dealing with stomach cancer, have family history, or are interested in learning more about early detection and H. Pylori screening, these organizations are invaluable resources.

Final Thoughts

Andy Goodspeed’s story is a reminder that the second chance you get—whether it’s surviving cancer, recovering from addiction, overcoming depression, or any major life change—doesn’t belong to you alone.

It belongs to everyone you’ll help because you’re willing to get uncomfortable, to tell your story, to show up even when you’d rather be home watching TV. It belongs to the person who will read your story and finally go get that screening. It belongs to the Senate staffer who won’t remember your face but will remember that you looked them in the eye and told them why H. Pylori matters.

You don’t need to be a natural public speaker. You don’t need to have all the answers. You just need to be willing to look in the mirror and ask: Can I really waste this?

And then do the work. Messy, uncomfortable, imperfect work. But work that matters.

That’s what Andy has done. And he’s proof that it’s never too late to start.

Are you a cancer survivor, patient, or caregiver? You already have the most important credential for advocacy: lived experience. Reach out. Show up. Your story might be exactly what someone else needs to hear.

The news is not what I wanted. My Guardant Reveal test came back positive. There is cancer in my body again.

I sat with that for a while before I wrote a single word.

Then I felt something I did not expect. Gratitude.

Here is why.

What a positive result actually means

Guardant Reveal is a blood test. It looks for circulating tumor DNA. These are tiny fragments of cancer that shed into the bloodstream. The test can find them long before a tumor is large enough to appear on a scan.

That last part is the part I need you to understand.

In the COSMOS study of Guardant Reveal, published in Clinical Cancer Research, a positive result showed up a median of 5.3 months before recurrence was visible on imaging. For some patients, the lead time stretched well past two years. The longest recorded was 28.7 months.

Across the broader research on ctDNA in colorectal cancer, that median lead time runs around 8.7 months. Some studies report up to 11 months.

Read that again. Months. Sometimes years.

The test can see what the scan cannot see yet.

My surveillance plan

Since my treatment, my oncologist has been running CT scans every six months. That is good care. It is the standard.

After three years of clear scans, we were feeling confident. The plan was to move to annual imaging. That is also standard. Also reasonable.

Now walk through what that plan means in a world without the blood test.

The scan-only timeline

Imagine my Reveal test does not exist. I am relying on imaging alone.

I get a clean scan. Everything looks clear. I exhale. I go live my life.

But the cancer is already there. Too small to see. Below the resolution of the machine.

It grows. Quietly. For months.

On a six-month schedule, my next scan is half a year away. On an annual schedule, it is a full year away.

The disease does not wait for my appointment. Research that tracked patients from their first positive blood result to the moment disease became visible found that tumor burden does not hold steady in that window. It climbs. One analysis measured roughly a fifty-fold increase in circulating tumor DNA while patients waited for the cancer to grow large enough to detect.

So the scan that finally catches it is not catching it early. It is catching it after months of unchecked growth.

That is the version of this story I did not have to live.

The gratitude

The Reveal test caught the signal now. Not in six months. Not next year. Now.

Whatever comes next, I am starting from a smaller, earlier, more treatable place than I would have been if I had waited for a scan to sound the alarm.

That is the head start I am grateful for.

What this means for you

If you are a survivor, or you love one, here is the advocacy inside the story.

Ask your oncology team about ctDNA testing and whether it belongs in your surveillance.

Know your scan schedule, and understand what imaging can and cannot catch.

Remember that a clear scan is not the same as no cancer. It is the absence of visible cancer.

You are the General Manager of your own healthcare. Draft the best team you can. Use every tool on the table.

The wound becomes the wisdom. The wisdom becomes the work.

More soon. I am not going anywhere.

Every week I get to do something I genuinely love: slow down and spotlight the people who are out there doing the work. Not the headline-grabbing, press-release kind of work — the real kind. The kind where you take your own diagnosis, your own fear, your own lived experience, and you turn it into fuel for someone else. This week’s three advocates are doing exactly that, across colorectal cancer, diabetes, and appendix cancer communities. Let’s get into it.


Loni Paulsen — Fight CRC as a 2027 Ambassador

Some announcements stop you mid-scroll and make you want to cheer out loud. Loni Paulsen’s post was one of those for me. Loni just became a 2027 Ambassador for Fight Colorectal Cancer — and if you know anything about the Fight CRC ambassador program, you know this isn’t an honorary title. It means showing up, speaking up, and carrying the colorectal cancer community’s voice into rooms where it matters. Loni brings something irreplaceable to that role: personal truth. There’s a reason Fight CRC builds their advocacy infrastructure around people like her. Ambassadors are the connective tissue between a diagnosis and real policy change, between a patient feeling alone at 3am and knowing that someone has been fighting for them in Washington. Loni stepping into this role is a big deal, and she deserves every bit of celebration this community can offer. Follow her on LinkedIn and watch what she does with this platform. I have a feeling we’re going to be hearing a lot more from her. 


Simone Grapini-Goodman — Taking Diabetes Advocacy to Capitol Hill

Simone Grapini-Goodman just got back from Washington DC, and she did not go there to sightsee. She was part of a cohort of 16 Beyond Type 1 ambassadors who fanned out across dozens of congressional offices to make the case - in data, in argument, and in lived experience — for insulin affordability and protecting access to the technology that keeps people with diabetes alive. Read that again: dozens of congressional offices. That’s not a photo op. That’s organized, sustained, face-to-face advocacy of the highest order. Simone’s LinkedIn post used the phrase “#StrongerTogether” and I’ll be honest, I usually brace myself when I see hashtags like that, but in this context, it’s just true. You cannot do this work alone. It takes a room full of people who are willing to walk into a congressman’s office and say: this is my life, and your vote affects it. Simone is that person, and then some. If you work in the diabetes or chronic illness advocacy space, she’s one to follow closely. linkedin.com/in/simonegoodman


Lindsay Barad — A Rare Cancer Survivor Using Her Voice on a Public Stage

Appendix cancer is rare. I mean genuinely rare. The kind where a diagnosis can feel profoundly isolating because the community is smaller, the research is thinner, and sometimes it feels like the world doesn’t even know your cancer exists. That’s exactly why what Lindsay Barad did matters so much. Lindsay, an appendix cancer survivor, took the stage at the Living Proof 2026 event hosted by the Abdominal Cancers Alliance, and she spoke. Publicly. In front of a room of people. That might sound simple, but if you’ve ever had to stand up and say “I had this thing that almost nobody talks about, and here’s what it did to my life,” you know how much courage that takes. Lindsay didn’t keep her story private. She offered it up as proof, living proof, that people with rare abdominal cancers deserve to be seen, heard, and fought for. She’s building something important, and she’s doing it out loud. Follow her journey: linkedin.com/in/lindsaybarad

That’s Vol. 5 of the Advocacy at Work weekly spotlight, and honestly, every week I’m reminded that the patient advocacy world is full of people doing extraordinary things without nearly enough recognition.

If you know someone who deserves a spotlight — a caregiver, a survivor, a community builder, an advocate making noise in any disease space — I want to hear about them. Reply to this post, drop a comment, or find me on LinkedIn. Nominations are always open.

And if someone forwarded this to you: welcome. Subscribe at advocacyatwork.com so you never miss a week. These people deserve the audience.

I just learned something while touring through Lisbon’s Alfama district that stopped me in my tracks—literally and figuratively.

The narrow, winding streets that make this medieval neighborhood so impossibly charming? They weren’t designed for residents’ comfort. They were designed to confuse invaders. To slow them down. To protect the rulers in the castle on the hill.

For centuries, people lived in this labyrinth not because it made their lives better, but because it made someone else’s life safer.

I kept thinking about that as I climbed the steep cobblestones, as I hit dead ends and had to backtrack, as I watched tourists and residents alike struggle with navigation. The system worked—militarily. The castle remained defensible. But the people living in those confusing streets paid the price in daily inconvenience, poor sanitation, disease vectors, and compromised quality of life.

And then it hit me: This is exactly what’s happening in medical research.

The Maze We Built

The parallel isn’t perfect, but it’s haunting. For decades, centuries, really, medical research has been designed the way those medieval streets were: by people in power, for people in power, with little to no input from the people actually living inside the system.

Researchers design clinical trials. Pharmaceutical companies optimize protocols. Institutional review boards approve them. Hospital administrators implement them. And the patient? The person whose body will be the subject, whose life will be disrupted, whose survival might depend on the decisions made in those rooms?

They’re told where to show up and when to show up.

The protocols are written to be efficient for the system, not usable for the person. A patient needs to come in monthly for six-hour monitoring visits. Great for data collection. Devastating if you can’t afford to take time off work, don’t have childcare, or live three hours from the hospital.

Inclusion criteria are narrow, wonderful for statistical purity. Catastrophic if you have comorbidities, take other medications, or fall outside the demographic boxes researchers checked. You become “ineligible” not because the treatment won’t help you, but because you complicate the narrative.

Trial endpoints are chosen by researchers, outcomes that matter for publication, for regulatory approval, for career advancement. But what if the outcome that matters most to you—the ability to work, to be present with your family, to not spend every day managing side effects—isn’t being measured?

You’re living in the confusing streets. But you weren’t invited to help design them.

The Cost of Decisions Made Without You

Here’s what happens when research decisions are made for patients instead of with them:

We optimize for the wrong things. A trial might show a 15% improvement in progression-free survival but cause neuropathy in 40% of participants. Researchers celebrate. Patients suffer. No one asked patients what tradeoff they’d actually accept.

We miss critical problems. A protocol that requires weekly infusions sounds “efficient” until a transplant patient (like me) realizes the immunosuppression complications aren’t even on researchers’ radar. A trial design that excludes people over 75 might be statistically cleaner, but it abandons the population most likely to need the treatment.

We build inequity into the foundation. The patients who can afford to travel to trial sites, who have employers flexible enough for medical appointments, who speak the language of clinical research—they get in. Everyone else gets left out. The system works perfectly. For some people. Not others.

We measure what’s easy instead of what matters. It’s easy to measure a biomarker. It’s harder to measure whether someone can still play with their grandchildren, work the job they love, or feel like themselves. So we don’t. And then we’re shocked that patients refuse treatments with “good data” because those good numbers didn’t account for the parts of life that make it worth living.

The Research Advocacy Movement

But there’s a different path.

Over the last decade, something has shifted. Patient advocates, people like me, people living with the disease, people who understand the stakes not from a textbook but from a diagnosis, are being invited into research design conversations. Not as subjects. As partners.

When patients help design research, things change:

• We ask different questions. Not just “Does this drug work?” but “Will someone with a job and a family actually be able to do this trial?”

• We measure what matters. Quality of life. Symptom burden. Functional capacity. The things that determine whether you’ll actually stick with treatment in the real world.

• We catch blind spots. Researchers don’t think about things they’ve never lived through. When you bring together oncologists and patients with metastatic disease, geneticists and people navigating rare disease diagnosis, pharma scientists and caregivers managing daily treatment logistics, you catch problems that would have derailed everything.

• We build equity in. When diverse patient voices are in the room from day one, you design for the single parent working two jobs, the patient without transportation, the person with medical trauma who needs extra support. You don’t design around them. You design for them.

This is research advocacy. And it’s not a nice gesture. It’s essential.

I serve on patient advisory councils. I’ve contributed to research design conversations. I’ve reviewed grant proposals through CDMRP. And every single time, I’ve watched patient advocates fundamentally shift what research gets done, how it’s measured, and whether it will actually matter when it reaches a real person trying to survive.

Your wisdom belongs in that room. Not because you have a degree in oncology. Because you live with the stakes.

From Patient to Advocate

Here’s the uncomfortable truth: The system still isn’t designed with you in mind. The maze is still confusing. The streets still belong to those who built them.

But you don’t have to navigate it alone. And you don’t have to stay silent.

In my book, From Patient to Advocate: Turning Survivorship Into Impact, I walk through exactly how to do this. How to move from “I was diagnosed” to “I’m shaping the research and care systems that will help the next person.” How to understand the landscape of patient advocacy—the organizations, the opportunities, the ways your voice matters.

Because here’s what I learned: The wound becomes the wisdom, and the wisdom becomes the work.

Your diagnosis, your treatment, your survival—that’s your wound. The insight you’ve gained from living through it, the questions you ask, the problems you see in systems designed without you, that’s your wisdom. And the work is taking that wisdom into the rooms where decisions get made.

Whether it’s:

• Joining a patient advisory council for the organization researching your disease

• Becoming a peer reviewer for grant funding

• Speaking at conferences about what research needs to account for

• Contributing to protocol design so trials are actually doable for real people

• Advocating within your medical team for outcomes that matter to you

• Or simply telling your story in a way that helps researchers remember: this is a person, not a data point

All of these are research advocacy. All of them matter. All of them require the same thing: Your voice, saying what needs to change.

The medieval rulers didn’t ask residents how to design the city. The system worked for them. It’s taken centuries to realize it didn’t work for anyone else.

We don’t have centuries to wait for research to figure this out. Patients are being diagnosed right now. Treatments are being designed right now. Decisions that will shape someone’s survival are being made right now—in rooms where patient voices are still sometimes absent.

You have wisdom from your wound. The question isn’t whether you should advocate.

The question is: Will you?

Ready to Start Your Advocacy Journey?

If this resonates, if you’re ready to move from patient to advocate, to understand how your experience translates into impact, to find the entry points that match your skills and your story, I’ve written a guide.

From Patient to Advocate: Turning Survivorship Into Impact is available now.

It’s a practical, unflinching look at:

• How to identify where your advocacy can matter most

• The landscape of patient organizations and where you fit

• How to speak with authority about your experience (because you do have authority)

• Real stories of advocates who moved from diagnosis to impact

• Concrete steps to start or deepen your advocacy work

• How to sustain this work without burning out

Paperback: Available through Amazon and independent booksellers
eBook: Amazon Kindle and other platforms
Link to Amazon

Because the wound becomes the wisdom. And the wisdom becomes the work.

The question is whether you’ll do yours.

What was your path to advocacy? Are you thinking about stepping into this work but unsure where to start? Reply in the comments—I read and respond to every one.

Tim McDonald is a Community Manager, patient advocate, and author of From Patient to Advocate. He serves on multiple patient advisory councils, co-hosts the Advocacy at Work podcast, and helps patients find their voice in research and care systems. This post is part of the Advocacy at Work project—turning survivorship into impact.

In 1995, Matthew Zachary was a classically trained concert pianist entering his senior year of graduate school when his left hand stopped working.

He ignored it.

He was 21. He was invincible. So he ignored the headaches, the fainting spells, the gradual loss of function. He got through the semester. Then came the fainting spell that couldn’t be ignored, followed by misdiagnosis after misdiagnosis until finally: a terminal pediatric brain tumor in his cerebellum.

He survived. Craniotomy. Radiation. But he lost his music. He lost the career he’d built his life around. He lost his certainty about the future.

And he didn’t die.

For years, he meandered through the 1990s, he describes it, like Cain roaming the earth with no purpose. He worked fixing toner for ad agencies. He was alive, but untethered. Then, seven years after his diagnosis, he found his first cancer buddy: a man named Craig who was bald, Jewish, had brain cancer in his twenties, was from New York City, and had gone to his college.

“There’s people like me,” Matthew realized.

And in that moment, everything went from black and white to color.

The Birth of Stupid Cancer: Giving Permission to Be Angry

In the early 2000s, the cancer survivor community was united by one dominant voice: Livestrong. Lance Armstrong’s foundation dominated the landscape with inspirational messaging, yellow wristbands, and a narrative of triumph.

Matthew saw something missing: permission to be angry.

“Everything was pink blenders and pink jets and yellow wristbands and pretty people in photographs looking perfectly fine,” he recalls. “And I just wanted to be very Gen X about it. Very angry, but smart, satirical, sardonic, pop-cultural. There was no populism in anything back then.”

So he created Stupid Cancer. The name itself was irreverent, shocking, even, for its time. The approach was radical in its realness: angry, funny, smart, and unapologetically honest about what it felt like to be young and sick in America.

This was 1984 internet. No Facebook (well, not yet). No YouTube. No podcasts. Everything was analog and guerrilla. Matthew was broadcasting a live talk radio show over dial-up internet. He was jumping on every emerging platform, MySpace, Facebook, Twitter, YouTube, as they appeared, staying perpetually ahead of the curve.

“It was a terrible privilege to have so much fun meeting people,” he says. “They’re sick, they’re dying, but you’re giving them a good time to figure this out together.”

For thirteen and a half years, he ran Stupid Cancer. He built a global community. He mentored a generation of young adult cancer patients and advocates. He watched his “disciples of kindling” grow into leaders like Trevor Maxwell at Man Up to Cancer, planting seeds that would grow into the modern cancer community we see today.

But somewhere along the way, something shifted. The landscape changed. And Matthew realized the real enemy wasn’t cancer anymore.

The Evolution: When Health Insurance Becomes the Greater Threat

Matthew’s definition of advocacy has evolved dramatically over thirty years.

When his cancer buddy Craig asked him to become a “cancer advocate,” Matthew didn’t know what that meant. Craig’s answer was brilliant in its simplicity: “You can help the next person have a much less shitty time.”

For many years, that’s exactly what advocacy meant. Being there for the next person. Creating community. Helping someone feel less alone. Stupid Cancer did that masterfully.

But Matthew has evolved his thinking into what he calls “Advocacy 2.0”—a framework focused on civic power, organizing, and a single unifying issue: health insurance determining whether people live or die.

“It isn’t just your tumor,” Matthew explains. “The modern challenge in oncology is health insurance and what they’re doing to us.”

Consider the timeline: In the 1990s, the real fight was against cancer. The mortality rates were high. Survival was the goal. Today, if you’re fortunate enough to survive cancer, you face a different enemy: medical debt. Insurance denials. Fighting for your doctor’s recommendation to be honored instead of overruled by a profit-seeking corporation.

“We’re not all dying as much, which is good,” Matthew says. “It’s different, it’s better, it’s worse, but it’s different. Today it’s differently shitty.”

“We the Patients”: A Book for This Moment

Matthew didn’t write a memoir. That surprised people.

“Most people that write books that have trauma write a memoir,” he explains. “And there’s nothing wrong with that. But I didn’t feel that that was what the readership of the country needed to hear or feel or see or think.”

Instead, he wrote a policy book. A call to action. A patient rights manifesto for a moment in American history when health insurance has become predatory.

The book reaches back to 1910, when Teddy Roosevelt proposed universal healthcare and J.P. Morgan essentially paid the American Medical Association to block it. It spans a century of American healthcare history. But it focuses on now, on a moment when the Affordable Care Act is under attack, when drug companies are exploiting loopholes, when insurance companies are denying life-saving treatments, when families are diluting baby food to afford chemotherapy.

“This book is written now and not earlier,” Matthew says, “because we’re at a critical point in American history.”

He’s experienced the full arc: global thermonuclear war threats of the Cold War, 9/11, recessions, pandemics. But today’s threat is different.

“The one missing thing now is the next great second generation of patients rights movements.”

The Single Issue: Health Insurance Can't Be the Gatekeeper to Life

What unites the cancer community? What single issue could mobilize millions of patients, caregivers, families, and doctors?

Matthew’s answer: No one should go broke or be denied care because of health insurance.

That’s it. That’s the issue.

It doesn’t matter if you’re conservative or liberal, Christian or Jewish, straight or gay, black or white. That single threat, the possibility that a corporate algorithm might determine whether you live or die, affects everyone.

“I don’t care who you voted for,” Matthew says. “But no one voted to have this happen to them and their families. No one wants their health insurance to bankrupt them. No one wants health insurance to get in the way of their care. No one wants their health insurance to play God and tell their doctor what to do.”

This is where advocacy becomes activism becomes organizing.

From Community Care to Civic Power

Matthew is careful to distinguish his original message from his new one.

“Cancer is not going away. There’s always going to be a need to be there for the next person. I’m not taking that away,” he says.

But there’s an “upstream strategy” now. A level above individual support.

The example he gives is Act Up during the AIDS crisis. They didn’t just support each other. They organized. They shamed. They made noise. They forced political response through the only thing that moves Congress: the threat of electoral consequences.

“What’s the one thing that every cancer patient, family caregiver would want beyond not dying?” Matthew asks. “That our doctors are our sacred bond. That we get access to the drugs we need. That health insurance isn’t our Lord and savior determining whether we live or die.”

Advocacy 2.0 is organizing around that single issue, dropping other agendas, recognizing that this threat is greater than any political difference.

“Organizing is really about dropping your ego, dropping your other political agendas,” he explains. “You organize under that specific issue. I don’t care if you’re gay, straight, black, brown, green, blue. No one that I’m aware of wants health insurance to bankrupt them.”

A Day in the Revolution

If barriers disappeared—no gatekeepers, no budget limits, no waiting for permission—what does one day of Matthew’s revolution actually look like?

It looks like millions of people unified around the principle that health insurance should never determine who lives and who dies. It looks like politicians understanding that opposing healthcare reform is electoral suicide. It looks like regulations, oversight, and transparency on insurance company denials.

It looks like doctors being trusted. It looks like treatments being available. It looks like families not being bankrupted by the cost of staying alive.

“The civil liberties of the cancer community are not infringed upon by the private sector’s profit motives,” he says simply.

A Piano, a Tumor, a Voice

Matthew Zachary didn’t set out to be a revolutionary.

He was a concert pianist. Then he was a survivor. Then he was a community builder. Then he was an entrepreneur running a nonprofit.

And now he’s an organizer.

The loss of his left hand meant he could never be a classical concert pianist again. But it freed him for something larger—speaking into a microphone, building community, organizing civic power.

“What do you do with the mad that you feel?” he quotes Mr. Rogers.

For Matthew, the answer is: organize. Build movements. Refuse to accept that health insurance companies should determine who lives and who dies. Write a book that explains why. Ask millions of Americans to understand that they have power when they organize.

The piano was one path. This is another.

And it might change healthcare in America.

Connect With Matthew and “We The Patients”

If you’re ready to organize:

• Website: wethepatients.org — Take the national poll on healthcare and find the book

• Book: “We the Patients” — Available everywhere books are sold

• Personal Website: matthewzachary.com

• Learn More: About organizing for healthcare reform and joining the patient rights movement

• Stupid Cancer: The community he founded that continues to serve young adult cancer survivors

I have one specific request: please take their unprecedented, bipartisan national poll on consumer perspective of healthcare. This data matters. Your voice matters.

Final Thoughts

Matthew Zachary survived pediatric brain cancer in an era when most pediatric cancer patients didn’t survive. He built a community that changed what it meant to be young and sick in America. He mentored thousands of people.

But his greatest work might be what he’s doing now: organizing.

Because you can survive cancer and still lose everything to medical debt. You can beat your tumor and have your treatment denied by insurance. You can do everything right and still be destroyed by a system that prioritizes profit over people.

Matthew is asking us to organize. To drop our other agendas. To recognize that we have power when we unite around a single issue: the belief that health insurance should never determine whether we live or die.

That’s not politics. That’s not partisanship. That’s basic human dignity.

And it might just be the revolution we need.

Are you fighting health insurance denials? Watching insurance companies override your doctor’s recommendations? Consider organizing. Connect with We the Patients. Read the book. Take the poll. Because alone, we’re patients. Together, we’re a movement.

Every week I sit down to write this and I think, how is it possible that there are this many people out there quietly changing the world? No press teams. No big budgets. Just people who decided their community needed a champion and showed up anyway. That's what Advocacy at Work is all about. This week's three advocates are the proof. Let's get into it.

Jackie George — Sickle Cell Foundation of Georgia
Facebook: https://www.facebook.com/SickleCellFndofGA

Some people spend a career building something meaningful. Jackie George built a legacy. This week, Jackie was recognized in an Atlanta Journal-Constitution op-ed for her extraordinary service to the sickle cell community — and if you know anything about the AJC, you know they don't hand out that kind of recognition lightly. What struck me reading about Jackie's work is that the word they kept coming back to wasn't 'effective' or 'impactful' — it was heart. That's not an accident. That's a life's work showing through. The sickle cell community in Georgia has fought for visibility for decades, and Jackie has been a steady, purposeful presence through all of it. She's a reminder that you don't need a title or a platform with millions of followers to make an immeasurable difference. You need clarity of purpose and the willingness to keep showing up. Jackie has both in abundance. If you're not following the Sickle Cell Foundation of Georgia, go fix that right now.

Dan Shockley — FAP & AFAP Advocate
LinkedIn: https://www.linkedin.com/in/dan-dry-dock-shockley-854723223/

Dan 'Dry Dock' Shockley is the kind of advocate that makes legislators pay attention. Not because he's loud, but because he's consistent. Dan has been working with his California congressional members year after year to bring awareness to Familial Adenomatous Polyposis and Attenuated FAP, and this week that persistence paid off in a big way. California State Senator Roger Niello introduced a concurrent resolution recognizing FAP Awareness Week for 2026, and it was approved. Let that sink in. A resolution. In the California legislature. Because Dan showed up, built relationships, and didn't stop. He does this work alongside his ostomy nurse Joyce Moss, and I want to make sure we recognize her too, advocates don't operate in a vacuum, and the healthcare providers who walk alongside them matter enormously. Dan's story is a masterclass in what sustained, relationship-based advocacy actually looks like. It's not one viral moment. It's years of handshakes and follow-up emails and being in the room one more time.

LeQuina Knox and Chatequa Pinkston — FL SAND Fellows & Developmental Disabilities Advocates
LeQuina: https://www.linkedin.com/in/lequinaknox/
Chatequa: https://www.instagram.com/chatequap/

Advocacy works best when people with lived experience walk into the rooms where decisions are made. That's exactly what LeQuina Knox and Chatequa Pinkston did this week. As Florida SAND Fellows they met with Florida State Representative Fentrice Driskell during DD Day 2026 to talk about what Floridians with developmental disabilities actually need. Not in the abstract. In person. Face to face. I love this story because it represents something fundamental about how change happens: connection. You can send emails. You can sign petitions. But when constituents look a legislator in the eye and say 'here's what my community is living' — that's when things start to shift. LeQuina and Chatequa are early in what I suspect will be long and meaningful advocacy journeys, and I'm glad to be paying attention now. Follow their work and watch what happens.


That's Vol. 4. Three advocates. Three different communities. One shared commitment to showing up for the people who need them most.

If you found this meaningful, the best thing you can do is share it with someone who needs to see that advocacy is alive and well. And if you know someone who deserves to be featured: a patient advocate, a caregiver, a community organizer doing the quiet hard work, nominate them. I read every submission.

Subscribe if you haven't. Tell a friend if you have. See you next week.

She was young. She wasn’t facing a health crisis. She hadn’t studied medical school or worked in healthcare. She just thought: Of course that’s what I would want to do.

Her mom, a nurse, and her brother pushed back. The whole conversation felt foreign to them. How could someone so young be thinking about donating an organ? It didn’t make sense.

But Debbie held onto that impulse. It stayed with her through high school, through building a successful coaching and speaking business, through marriage and life.

And then, one evening about fifteen years ago, everything crystallized. She was standing in the operating room at Tampa General Hospital, on a stool because she’s only five foot two, watching surgeons remove a 23-year-old woman’s damaged lungs and replace them with new ones. She was asked twice if she needed to step down because she was visibly emotional.

“Those new lungs,” she recalls, “when they took the old lungs out, they were small and dark. And when they brought this gift of life, they looked like angel wings to me. They looked white, they looked big and beautiful.”

In that moment, standing in an operating room watching a life be saved, Debbie’s childhood impulse—the one her parents had questioned—became a calling.

The White Coat Program: When a Hospital Invites You Inside

Debbie’s story of becoming an advocate is unusual because it doesn’t start with illness or crisis.

It starts with recognition.

Tampa General Hospital reached out to her, a community leader, someone active in the area, and invited her to participate in their White Coat internship program. It’s an exclusive experience where community leaders get paired with a doctor or surgeon, shadow them for a day, wear scrubs and a white coat with their name on it, and see the real work of a teaching hospital.

On the day Debbie participated, the cardiologist she was paired with spent time asking her what she wanted to see. After rounds and surgeries and family conversations, he said: “I’ve got to find something sexy for an hour.”

Debbie laughed and asked what a cardiologist thinks is sexy.

“A lung transplant,” he said.

What happened in that operating room became the moment that transformed Debbie from someone with a childhood impulse into someone with a mission. She watched new life enter a body that had been slowly suffocating. She felt the weight of it. She understood, viscerally, what organ donation meant.

Nearly ten years later, when she learned about the thousands of people dying every year waiting for transplants, something shifted. She decided to get tested. She was approved. And then COVID hit, and everything paused.

But Debbie didn’t wait.

The Pandemic Gift: Donating Alone, Together

In February 2020, Debbie was tested to become a living kidney donor. In early March, while she and her husband Michael were in California golfing with her aunt and uncle, she got the call: she was approved.

Then they flew back. COVID shut down the country.

Debbie was told she could opt out if she wanted. People were dying. The hospital was overwhelmed. No one would blame her for waiting.

She asked: “But aren’t people still going to die?”

She went through with it.

What followed was a profoundly lonely experience in a moment of profound connection. Because of COVID restrictions, Michael couldn’t attend a single appointment with her. He didn’t meet her coordinator or her surgeon. He couldn’t accompany her in the hospital or wait inside with her. He had to drop her off at the entrance and drive away.

For both of them, that isolation was strange. But Michael found a way to show up differently.

He had people send her cards, over a hundred of them. He got them to her transplant coordinator, Candace, who snuck them into Debbie’s hospital room so that when she woke up after surgery, she could open them and feel comforted by voices and love even though no one could visit in person.

Debbie recovered quickly. After about 28 hours in the hospital, she was ready to go home with one kidney. And Michael made a decision: he would become a kidney donor too.

Not because Debbie pressured him. Not because he felt obligated. But because he had heard their surgeon, Dr. Wong, speak about the statistics. And something clicked. He saw the need. He decided to do it.

“He’s the cutest copycat you’ll ever meet,” Debbie laughs.

Michael’s process was faster because he already knew what to expect. He went through testing quickly. And a couple of years later, when COVID restrictions eased, he had his surgery.

Now they call themselves “two one beaners”—a couple who each have one kidney. And they’re part of an extraordinarily small group: couples who both donated kidneys, not to each other, but to strangers in the donation chain.

Angel Wings and Beyond: When Your Donor Life Becomes Your Identity

Here’s something unexpected about Debbie and Michael’s journey: neither of them knows the person who received Debbie’s kidney. They have no relationship. It was a chain donation, and the kidney went where it was needed, to someone they’ve never met.

But Michael’s kidney went to someone who has become part of their lives. Someone who hugs Michael in public and tells him: “The only thing we had planned was my husband’s funeral. Now they’ve had over five years of amazing life together.”

Those are very different experiences. And Debbie learned something crucial from the Kidney Donor Athletes community (an organization of over a thousand donor-athletes, where she became immediately active): you can’t control what relationship, if any, you’ll have with your recipient.

Some donors don’t want to meet their recipients because they’re afraid that if complications arise, they’ll feel responsible. Some recipients don’t want to meet donors because they’re processing their own trauma. Some become like family. Some remain beautiful strangers.

“You can’t have in your mind what you’d like the relationship to be,” Debbie explains. “Because you may not know the recipient. You might know them, but you don’t have anything in common. Or they might not want to meet you if you’re altruistic. So there’s all this stuff that I don’t know. I had this fantasy, I might go running with this person and that didn’t happen and it’s never going to happen. And that’s all okay, because back to your question about advocacy, if you do it for the right reason, no matter how it shakes out, it’s how it’s supposed to be.”

That’s a profound wisdom: the gift isn’t about the relationship it creates. It’s about the life it saves.

Turning Tragedy Into Advocacy

A couple of years after their surgeries, Debbie and Michael experienced something most of us would consider catastrophic: they lost their home in a hurricane. Everything except the clothes on their backs was gone.

Most people, faced with that loss, would understandably go into survival mode. Debbie and Michael did something different. They turned their loss into action.

They organized a fundraiser where people could literally throw bricks through the windows of their destroyed home. Every brick thrown raised money. All the proceeds went to charity—the National Kidney Foundation’s Kidney Walk, the Crisis Center, the University of South Florida’s Women in Leadership and Philanthropy scholarship program.

They were over 600 days without a permanent home. And instead of focusing on their own loss, they focused on creating something bigger than their suffering.

“We may not have much at times,” Debbie says, “but if someone else can use it more, we’re going to give it to them.”

This isn’t noble suffering. It’s not toxic positivity. It’s a clear-eyed choice: We can sit and sulk and wait, or we can take action and create a new environment.

They chose action. Together.

The Hospital Council: Understanding Patient Experience From the Other Side

One of Debbie’s most impactful roles is serving on Tampa General Hospital’s Patient and Family Advisory Council (PFAC). What’s remarkable is that she’s there not as a patient, but as a living donor.

Being on this council has given her a window into the entire patient experience at the hospital—cancer care, neonatal services, heart and lung and liver transplants, emergency departments. She and Michael even co-chaired the transplant division.

But what she’s learned goes beyond the specifics of medical care. She’s learned something fundamental about hospitals:

“There are only two types of people who check into a hospital, really happy living organ donors and people who are going to have healthy babies. But everyone else goes into a hospital and they’re scared or they’re nervous or they’re at least apprehensive because not a lot of it is elective in a hospital.”

This understanding has shaped how she thinks about advocacy and healthcare. When she speaks to nurses, techs, doctors, and hospital staff, she says: “You’re meeting people who aren’t at their best. So thank you for giving us your best.”

It’s a simple reframing. A reminder that healthcare workers aren’t just treating conditions, they’re caring for people at vulnerable moments. And that matters.

Debbie’s Definition of Advocacy: Kindness Without Expectation

When Debbie defines advocacy, she cuts through a lot of noise.

“Advocacy is whatever you can do that can assist someone else, whether they know that you’ve done it or not. I associate advocacy a lot with kindness.”

She goes further: “I encourage people to be kindly direct and directly kind. If you do something for someone and you expect something in return, that’s like a business relationship that’s not really kindness. And if you expect people to give you accolades for it, that’s a bit of showmanship.”

Real advocacy, in Debbie’s view, comes from a place of genuine wanting to help. It doesn’t come with strings attached. It doesn’t demand recognition.

This is radically different from how we often think about advocacy. We imagine activists with megaphones, patients testifying before Congress, campaigns fighting for policy change. And all of that matters.

But Debbie’s vision of advocacy is quieter. It’s about the woman who mentors over 20 people who want to become organ donors. It’s about sitting on a hospital council and quietly insisting that patient voices are heard when a new building is being designed. It’s about throwing fundraisers after losing everything.

It’s about doing good because it’s good.

The Dream: Planting Seeds Across America

If resources were no object, what would Debbie do?

She’d travel to middle schools, high schools, and colleges across the country. She’d talk about the power of organ donation. She’d show healthy, thriving people who have donated kidneys and livers and parts of their livers. She’d explain what actually happens in organ donation, dispelling myths and fears.

Because here’s what people don’t understand: some people refuse to become donors because they believe hospitals will let them die to harvest their organs. They think being a donor means less care. It’s a myth, but it’s a powerful one that costs lives.

Debbie wants to plant the seed of donation early. She wants young people to see real donors, healthy people who’ve gone on to run marathons and play sports and live full lives. She wants them to understand the process. She wants them, when they turn 18, to make an informed choice to sign up.

“That can make the difference in people living or dying,” she says.

The Pattern: Converting Circumstance Into Community Action

What strikes me most about Debbie’s story is the pattern: she has a remarkable ability to take personal circumstances—a white coat program, a lung transplant, kidney donation, a hurricane, loss—and convert them into community action.

Is this a philosophy? A coping mechanism? A bit of both?

Debbie suggests it’s all of the above. But it’s also a choice. Again and again, she and Michael have chosen action over passivity, purpose over despair, community over isolation.

When they lost their home, they could have withdrawn. Instead, they threw a brick-smashing fundraiser.

When Debbie decided to donate a kidney during a pandemic when hospitals were overwhelmed, she could have waited. Instead, she asked: “But aren’t people still going to die?”

When Michael heard statistics about how many people needed transplants, he didn’t think about his own safety or comfort. He thought about need. He decided to help.

This is what real advocacy looks like, Debbie suggests: not as a grand gesture or a career, but as a pattern of choosing compassion when you could choose comfort.

Connect With Debbie

If you want to learn more about Debbie’s work:

• Website: Presenting Powerfully (for her coaching and speaking work)

• Email: debbielundberg@debbielundberg.com

• Social Media: Search “Debbie Lundberg” on TikTok, LinkedIn, and other platforms

• Kidney Donor Athletes: An incredible community for living kidney donors (thousands of members, with transplant games and ongoing support)

• Donate Life: If you want to become an organ donor, sign up through DonateLife.net

• Tampa General Hospital Patient & Family Advisory Council: If you’re interested in having a voice in hospital policy and design

Final Thoughts

Debbie Lundberg’s story is a reminder that advocacy doesn’t require a crisis diagnosis. You don’t have to be a patient to be an advocate. You don’t have to be angry at a system to want to change it.

Sometimes advocacy starts with a young person at a DMV counter thinking, Of course that’s what I would want to do.

Sometimes it’s a moment in an operating room watching angel wings come to life.

Sometimes it’s a choice to ask, What if I could help? And then actually doing it.

Debbie’s lived kidney donation from a place of abundance, not scarcity. From a place of asking who needs this more than I do? rather than what will I get in return?

And in doing that, she’s shown that advocacy isn’t just about fighting for laws to change. It’s about choosing kindness repeatedly, in small and large ways, until it becomes a pattern that shapes your entire life.

That pattern, multiplied across the country, across all of us asking what we can give instead of what we can get, could literally save lives.

“Plant that seed much sooner and much wider,” Debbie says about organ donation education.

But she could be talking about advocacy itself. Plant the seed. Show up. Choose compassion. See what grows.

Are you interested in becoming an organ donor? Visit DonateLife.net. If you’re already a donor and want community and support, Kidney Donor Athletes is waiting for you. And if you’re inspired by Debbie’s approach to turning hardship into purpose, ask yourself: what circumstance in my life could become an opportunity to help someone else?

Every week I get to do something I genuinely love: shine a light on people who are out there doing the quiet, hard, necessary work of advocacy. Not for the applause. Not for the LinkedIn likes. Because they believe something better is possible — for their communities, for patients who come after them, for people who don’t yet know help exists. This week’s three advocates are a perfect reminder of why I started this newsletter. They showed up. They brought their full selves. And they made something move. Let’s talk about them.

Melissa Buffalo — Meeting Communities Where They Are

Melissa Buffalo traveled to Dallas for the American Cancer Society National HPV Vaccination Roundtable and the American Cancer Society National Roundtable on Cervical Cancer. And she didn’t just attend, she engaged. She got into the breakout sessions. She listened, she contributed, and she left with something concrete: a clearer sense of how to craft messaging that actually resonates with tribal communities around HPV vaccination and cervical cancer prevention.

That last part is what gets me. It’s one thing to go to a national roundtable and absorb information. It’s another to walk out thinking, how do I take this home and make it land for the people I serve? Melissa is already thinking about her communications team, her program team, her community. That’s not conference attendance, that’s advocacy in action.

Cultural relevance in cancer prevention messaging isn’t a nice-to-have. It’s the difference between a campaign that gets ignored and one that saves lives. Melissa gets that. Connect with her on LinkedIn at linkedin.com/in/melissa-f-buffalo.

Anne Easter — Building the Infrastructure of Support

Think about what it takes to host a networking session once. Now imagine doing it a third time — refining it, deepening the relationships, making it better each year. That’s what Anne Easter did at NAMICon 2026, the annual national conference of the National Alliance on Mental Illness.

Anne brought together CPALS TD Champions and NAMI Tardive Dyskinesia Education Grantees from across the country for an afternoon of shared learning and collaboration. Tardive Dyskinesia is a movement disorder often caused by medications used to treat psychiatric conditions, and it’s a community that doesn’t always get the spotlight it deserves. Anne is changing that, one connection at a time.

What strikes me about this is the sustained commitment. A third session means Anne showed up twice before, built trust, and kept going. That’s what real advocacy infrastructure looks like. It’s not a one-time event — it’s a relationship. Find Anne on LinkedIn at linkedin.com/in/anneeaster.

Valarie Traynham — Making Yourself Visible So Others Feel Less Alone

During ASCO 2026, one of the biggest oncology conferences in the world, Valarie Traynham did something quietly courageous: she shared her cancer journey at the Breakfast Club event hosted by Worldwide Clinical Trials Oncology in partnership with Imerman Angels.

I know how hard that is. When you’re a cancer survivor standing in a room full of researchers, clinicians, and trial professionals, and you decide to open up about what you actually went through - that takes something. It takes the willingness to be vulnerable in a space that often runs on data and presentations. Valarie brought the human element into that room.

Events like this exist precisely because patient voices need to be in those spaces. Research decisions, trial designs, communication strategies, they all get better when real patients speak up. Valarie did that. She made herself visible so that someone else, maybe a researcher, maybe another patient, could feel a little less alone. Connect with her at linkedin.com/in/valarietraynham.

These three are doing real work in the real world. If someone in your life is doing advocacy that deserves recognition, I want to hear about it. You can nominate someone for next week’s edition at advocacyatwork.com — and if you’re not yet subscribed, this is your sign. Drop your email and join a community that celebrates the people actually doing the work.

Seven years.

“If you sprained an ankle, you wouldn’t wait seven hours to go see a doctor,” Carlos says. “Much less seven years for something like mental health.”

For him, those seven years, or something close to it, were filled with struggle. Anxiety. Depression. PTSD. All while serving as a Marine Corps veteran, firefighter, and paramedic. All while trying to handle it on his own, coping in “ways that were less than healthy with alcohol and other things.”

Then came the breaking point. “My pain and suffering had gotten to be too much. I just couldn’t bear the suffering anymore,” he recalls. “I was like, I need help. If I don’t get help, I’m not going to stay on this earth.”

That admission, that surrender, changed everything. It led him to therapy. It led him to become a clinical psychologist. And it’s led him to spend the last decade in a profession built on something most of us are taught to hide: vulnerability.

His story is an invitation to the rest of us who are still waiting those seven years.

Being a Therapist Who Gets It Because He Lived It

Carlos has been practicing psychology for just over a decade. But his real expertise comes from something no graduate program could teach: he’s been where his clients are.

He knows what depression feels like. He knows the weight of PTSD. He knows what it’s like to struggle alone, convinced that you can handle it yourself. He knows the moment when you can’t anymore.

This lived experience is everything. And he’s acutely aware of it.

“I didn’t learn this stuff in school,” Carlos tells me, describing a moment with a depressed client. “You’re talking from a place of real life experience, and there’s a connection in that moment where some of the walls fall away, the trust deepens.”

It’s the difference between someone who has read about depression in a textbook and someone who has felt it in their body, in their mind, in their bones. Clients can sense that difference immediately. Walls come down. Trust deepens. Real work becomes possible.

This is what separates authentic advocates from authority figures. You can feel it. You just can.

From Broken to Healer: The Why Behind the Work

Carlos describes a moment after he’d recovered from his struggles, that point when you realize you’ve actually made it through to the other side. Something shifts. An internal voice says: There has to be a reason for this. There has to be a way I can use this to serve others.

Before graduate school, he made himself a promise: “If I just help one other person heal, then it will have been worth me going through six years of graduate school and all of that stuff.”

But there was more to it than that. He’d been blessed with compassionate therapists and psychologists along the way—people who showed him patience, love, and understanding in his darkest moments. He wanted to pass that forward.

“I wanted to pull from that. There was a way that inspired me,” he says. “And you could see it as soon as I had my first client in front of me and I was on the other side of that couch, that I was embodying these people that had come before me and able to give the gift that they gave me.”

This is the real origin story of an advocate: not from guilt, not from obligation, but from genuine gratitude and a desire to pay forward the kindness that saved you.

The Ripple Effect: Measuring What Matters

One of the most profound questions in any helping profession is: How do you actually measure impact?

You can’t put a dollar sign on it. You can’t reduce it to metrics. So how do you know you’re making a difference?

Carlos describes a client he’s been working with for four years, someone who came in at a dark place. Through their work together, the client has healed. His relationships with his kids improved. He became part of a church community. He started running a men’s group and now gets to see the impact he’s having on other men because of things he learned in therapy.

“What a blessing that I get to go home at the end of the day and see the evidence of that,” Carlos reflects.

But the impact extends far beyond the therapy room. About seven or eight years ago, he had a realization: Why do we hide this healing process behind closed doors? Why do we hide it behind shame?

That question led him to get out and speak. To share his story. To become, as he puts it, “a walking permission slip for people to take off their mask, the mask that we hide behind our struggle and our shame.”

Now he gets messages from people after his talks: “You have no idea. I needed to hear that today.” Or: “This is going to help me go help somebody in my life.” He gets cards from clients he saw six, seven years ago telling him he has no idea what impact he had.

“Those things, those are the things that remind me every day why I get up, why I keep doing this, and why there’s still so much more work to do,” he says.

The impact isn’t measured in dollars or quarterly reports. It’s measured in conversations. In permission slips. In ripples.

Advocacy as Service: The Definition That Changed How I Think About This

When I asked Carlos to define advocacy, his answer was simple but profound:

“Advocacy, I think it’s about taking what gifts we’ve been given and what things we have learned in life and giving that over to others through service, whether it’s through the work that we do, whether it’s through the way we parent, whether it’s through being there as a friend, taking those gifts and serving humanity with them.”

Not activism. Not policy work. Not necessarily politics.

Service.

Taking what you’ve learned, especially what you’ve learned through pain, and giving it to others. That’s advocacy.

It reframes everything. Your struggle isn’t wasted. Your recovery isn’t just for you. What you learned in your darkest moments becomes a gift you can give.

The Therapeutic Nature of Helping Others (And Why That Matters)

Here’s something I noticed when talking to Carlos: his work as a healer is also deeply healing for him.

When I asked if advocacy felt therapeutic, he laughed. “Oh, profoundly. And I would say that’s still happening, right?”

He describes the privilege of sitting with people at their most vulnerable. Of witnessing their struggle and their resilience. Of seeing “the fingerprint that is each individual.” And of being trusted with that intimate work.

“I get to see that every day and how moving that people even get to trust me with that kind of work. And so yeah, it feels therapeutic because then I get to pull from a lot of my examples,” he says.

This is important, especially for anyone thinking about getting into advocacy work: you’re allowed to benefit from it too. You’re allowed to be healed by the work of helping others. That’s not selfish. That’s human.

Being Married to Another Therapist: What Could Go Wrong?

Near the end of our conversation, Carlos reveals something that made me laugh: he’s married to a marriage and family therapist. They have a four-year-old son.

“So it’s really fascinating to see, I say this, either this child is going to grow up to be the most psychologically and emotionally healthy child, or we have developed probably new ways of somehow messing him up,” he jokes.

The truth is probably somewhere in between. But there’s something beautiful about two people dedicated to healing raising a child together. All those conversations at home. All that emotional intelligence. All that modeling of what it looks like to do this work with intention and love.

Their kid is watching two parents choose vulnerability. Choose to keep learning. Choose to show up for others. That’s a different kind of education.

The Dream: Healing Across the Globe

If resources were no object, what would Carlos want to see?

“The vision would be to bring healing across the globe, across the world,” he says. Facilities where people can come for yoga and therapy and all the modalities that help us become the best versions of ourselves. Conversations that ripple outward, building “a world that’s more grounded in love and compassion and understanding.”

It’s beautiful in its simplicity. Not a specific legislative victory. Not a particular protocol change. Just: more healing. More ripples. More love and compassion.

His vision for advocacy is a world where fewer people have to wait seven years for help. Where vulnerability isn’t shameful. Where your struggle becomes your superpower.

The Power of Lived Experience: Why You’re Qualified to Help

Here’s what I keep coming back to from this conversation: Carlos is effective as a therapist and advocate precisely because he’s been through it.

He didn’t learn depression from a textbook. He experienced it. He didn’t read about PTSD in a clinical manual. He carried it. He didn’t intellectually understand what it means to feel like you can’t stay on this earth, he felt it.

And now, when he sits with a client struggling with those same things, they don’t have to wonder if he really gets it. They know he does.

That’s the opposite of what our culture usually teaches us. We’re trained to hide our struggles, to present as having it all figured out, to never let anyone see we’ve been broken.

But Carlos inverted that. He took his brokenness and made it foundational to his work. He became a walking permission slip for others to be human, to struggle, to ask for help.

If you’ve been through something difficult, you’re not disqualified from advocacy. You’re qualified. Your pain becomes your credential. Your recovery becomes your expertise.

What Seven Years Costs Us

That statistic haunts me: seven years between when a man experiences his first mental health symptom and when he seeks help.

What happens in those seven years? What relationships are lost? What potential is unrealized? What unnecessary suffering happens?

For Carlos, those years involved coping mechanisms that didn’t work, struggling alone, and nearly losing his life. For countless other men, it’s the same story.

But it doesn’t have to be.

If even one person reads this and decides not to wait seven years, that’s everything. If one person decides they don’t have to figure it out alone, that’s transformational.

Carlos became a therapist because he wanted to be the person for others that his own therapists were for him. Someone who shows up with compassion. Someone who doesn’t judge. Someone who says: I know how dark this is, and I’m still here.

Connect With Carlos

If you want to learn more about his work and philosophy:

• Instagram: @dr.carlos.a.garcia — He posts regularly about mental health, healing, and the human experience

• Podcast: The Human Experience Podcast — A warm, conversational show about the ups and downs of life, co-hosted with a friend. About 20 episodes in, and reviewers say it feels like sitting down with a cup of coffee and chatting with someone who gets it.

Both spaces are invitations to vulnerability and connection. Both are places where healing happens.

Final Thoughts

Carlos’s story is a reminder that advocacy isn’t just for policy experts or career activists. It’s for anyone who’s been through something and decided to use that experience to help others.

It’s for the Marine who struggled with PTSD and became a therapist.

It’s for the person who waited too long for help and now makes sure others don’t have to.

It’s for anyone willing to be a walking permission slip, someone who shows vulnerability so others feel safe being vulnerable too.

Your struggle might be the exact thing someone else needs to hear to get help. Your recovery might be the proof someone else needs that healing is possible.

Don’t wait seven years. And don’t let your story go untold. Someone out there needs to know they’re not alone.

That’s the real power of advocacy.

Are you struggling and waiting to seek help? That’s the first ripple of change—reaching out. The National Suicide Prevention Lifeline (988) is available 24/7. You’re not alone.

Have your own story of healing? Or are you thinking about how your pain could become service? I’d love to hear from you in the comments.

Every week I get to do something that genuinely fills me up: stop and pay attention to the people who are quietly, and sometimes not so quietly, changing things. Not waiting for permission. Not waiting for the system to catch up. Just showing up, doing the work, and dragging the rest of us forward with them. This is Volume 2 of This Week in Advocacy, and if last week was any indication, we are not going to run out of incredible humans to celebrate anytime soon. Let’s get into it.

Sarah Leathers — Food Is Medicine Is a Movement

Sarah Leathers showed up at FIMCON this year, and I mean that in every sense of the word. The first-ever FIMCON brought together more than 800 leaders from healthcare, research, policy, and community organizations, all focused on advancing the Food Is Medicine movement. That alone is remarkable. But what stood out to me about Sarah’s post wasn’t the scale of the conference. It was the line about being there alongside members of the CT Food as Medicine Alliance. That’s the thing about real advocates, they don’t just attend rooms, they bring their people with them.

Food as medicine isn’t fringe anymore. It’s a growing, evidence-backed framework that says what you eat is healthcare, and access to nutritious food is a health equity issue. Sarah is in that work, building that coalition, and showing up at the national table while keeping her roots firmly planted in her community. That’s the whole job, honestly. If you’re on LinkedIn, go find her and give her a follow, she’s the kind of voice worth adding to your feed. You can find her on Linkedin.

Diana Holmes, MBA — Painting the Hill Purple

I love this one. Diana Holmes and her crew with Alzheimer’s Association, went to Capitol Hill this week with a clear, specific, achievable ask: get every senator and congressman to co-sponsor the ASAP Act. Not a vague call to “do more” for Alzheimer’s. A bill. A vote. A mechanism. The ASAP Act would allow Medicare to cover blood tests for Alzheimer’s disease, which means earlier detection, earlier intervention, and more time for the people who need it most.

Diana is an MBA who clearly understands that advocacy without strategy is just noise. She paired passion with precision, and that combination is what moves legislation. The visual of “painting the hill purple,” the color of the Alzheimer’s movement, is exactly the kind of moment that gets staffers to pay attention and gets lawmakers to ask what they missed. This is what constituent pressure looks like when it’s done right. Follow Diana on LinkedIn and watch what she does next, because she is clearly not done.

Andy Goodspeed — Turning His Battle Into Someone Else’s Chance

Andy Goodspeed is from Fairfield, Maine. He’s a stage 4 stomach cancer survivor. And instead of retreating after everything his body has been through, he stepped in front of a camera at his local news station to talk about early detection, because he knows that the version of this story where someone catches it sooner has a better ending.

I know this kind of advocacy personally. When you survive something that statistically you weren’t supposed to, you face a choice: get on with your life and try to forget, or turn around and face it head-on so someone else has a fighting chance. Andy chose the harder road. He’s out there doing research awareness work, talking to his community, and using the platform of his own survival to push for the kind of early screening that might have changed his own story. Local news matters. Community visibility matters. One interview in Fairfield, Maine can reach the exact person who needed to hear it. Andy, thank you for sharing yours.

Those are your three advocates for June 7, 2026. Three different issues, three different platforms, one common thread: people who decided that their experience, painful as it may have been, was worth putting to work for someone else.

If this resonated with you, subscribe to Advocacy at Work so you never miss a week. And if you know someone who deserves to be in this spot: a patient advocate, a caregiver, a community organizer, a policy fighter, nominate them. Reply to this post, I want to hear about them.

That realization would take thirteen years to fully unfold. But the trajectory it set in motion, from trauma to testimony to a life built entirely around helping others, is the subject of the latest episode of Advocacy at Work.

The Night That Changed Everything

Vincent’s story begins with a decision that shouldn’t have been consequential. Walking home after a night out, he chose to pass on a ride from someone who’d been drinking. It was the safe call. And then a car leaving a bar hit him.

He woke up from a coma at Tampa General Hospital.

“I had to relearn to walk and talk. Spell my name. You name it, I had to restart life.”

Vincent had been a finance major pursuing his MBA, mapping out a career in the conventional sense: salary, corner office, title. The accident didn’t just injure him; it erased the version of himself he’d been building toward. Doctors told him he might need 24/7 care for the rest of his life. He might not return to school. The list of things that might never come back was long.

What followed was years of quiet, grinding work — physical, cognitive, emotional. He leaned on what his traumatic brain injury (TBI) had made harder: reading, writing, repeating. Where he once could glance at a study sheet before an exam, he now had to read, write, type, and listen again and again just to retain a fragment of information. He kept at it anyway, because he understood, viscerally, the power of keeping the brain active.

“I wouldn’t let someone I’ve never met ruin my life and my family and friends’ lives forever. I can work my way back. It just may not look the same.”

Left for Dead. Coming Alive. Living Proof.

The arc of Vincent’s recovery isn’t just personal, it became the literal framework for his professional life.

His company is called Left for Dead Incorporated. Under that umbrella sits Coming Alive, a podcast production company, and Living Proof, his TBI coaching practice. The naming wasn’t accidental. It’s a map of the journey: you don’t begin as living proof. You begin with what happened. You find your way back. And then, eventually, you become evidence that the comeback was possible.

“Left for Dead to coming back alive. Now we’re living proof — trying to walk. If I can do it, you can definitely do it. I am 100% no more special or gifted than anybody else out there.”

Along the way, Vincent wrote. A lot. He published Left for Dead, a TBI recovery memoir, in January 2026, thirteen years to the anniversary of his accident. He wrote children’s mental health books, including one where a fifth-grade teacher takes kids on a “mental health week” school trip in the style of the Magic School Bus. He launched multiple podcasts, including A Mental Health Break, which is where he and Tim McDonald first connected. He built a ghostwriting and book coaching practice. He formalized a podcast production service for others who want to share their stories.

None of it was linear. COVID ended his school speaking career before it really started. Finance roles he’d returned to never quite fit the post-TBI version of himself. Each dead end pushed him further toward what actually felt like his work.

Advocacy Is Just Sharing Your Story

When asked to define patient advocacy, Vincent doesn’t reach for a clinical definition.

“Advocacy to me is sharing your story.”

He’s quick to acknowledge that this sounds simpler than it feels. For a long time, he didn’t think anyone would care what he had to say. He didn’t want to be defined by the accident, to become, in his mind, “the kid who got hit by the car.” What changed it was attending those early TBI support groups at Tampa General and watching what happened after he spoke. People would come up to him afterward and say it helped. That feedback loop, small as it was, made him want to do it again.

“Once you lean into it a little bit, hearing someone say those things makes you kind of want to do it again to help a few more people.”

That’s the nature of advocacy he describes: it starts inward, with your own need to process and connect, and it slowly reveals itself as something that belongs to other people too. Sharing your story isn’t an act of ego. It’s an act of service.

The Broken Wrist Question

Perhaps the sharpest moment in the conversation comes when Vincent poses a question that reframes the entire mental health conversation.

“If you break your wrist, what do you do?”

You rehab it. You take time. You get surgery if you need to. You don’t go back to work until it’s healed. Nobody questions whether you deserve that recovery time.

“Now what if you’re going through a bunch of anxiety at work? You have no sick days, you have no PTO. Why is treating your mental health, while it’s still treatable, not the same thing?”

His argument is for prevention: that the same logic we apply to physical injury should apply to mental health. Taking a week to rest, eat well, get sunlight, exercise — these are interventions that can stop anxiety or depression from becoming something chronic and debilitating. The failure to treat mental health with the same institutional seriousness as physical health isn’t just a cultural gap. It’s a public health failure.

“I’d love to see that we take preventative actions for mental health like we would if you broke your wrist.”

One Is Enough

Vincent closes with a message that feels like the distillation of everything he’s lived.

“It only takes one piece of something to bring your momentum to the other side. One conversation, one networking event, one anything. One can change everything.”

He’s speaking from experience. He knows what it feels like to be in the dark. He also knows that somewhere in every seemingly ordinary moment — a support group, an email from a stranger, a podcast recording — there’s the possibility of a pivot. The work of advocacy, as he practices it, is about staying in motion long enough for that one thing to arrive.

To connect with Vincent, visit his website at vincentalanci.com, where you can learn about his books, coaching, podcast production services, and his podcast A Mental Health Break. He’s also offering a free ebook for anyone whose story this episode touches, no strings attached.

If you’re not yet subscribed to Advocacy at Work, now’s a great time. And if you know someone whose story belongs on this show, reach out — Tim wants to hear from you.

Every week, somewhere in the advocacy world, someone is quietly doing something remarkable. They’re not doing it for the spotlight, they’re doing it because patients need them, because gaps exist that someone has to fill, because they’ve lived through something hard and decided to turn that into fuel for others. That’s what This Week in Advocacy is all about. Three people. Three wins. Real work, real impact.

Let’s get into it.

Vanessa Ghigliotty, CPN — New Role, Longtime Heart

If you’ve spent any time in the GI cancer advocacy space, you already know Vanessa. She’s been showing up, at conferences, at events, in conversations that matter, for years. So when the GI Cancers Alliance announced she’s joining their team as Community Engagement Specialist, the response was less surprise and more: of course she is.

Vanessa is a 24-year colon cancer survivor. Let that sink in. Twenty-four years of living with that experience, processing it, and then turning it outward in service of others. She’s also a Certified Patient Navigator, which means she brings both the lived wisdom and the professional training to meet patients and caregivers where they actually are.

In this new role, she’ll be deepening connections to GI Cancers Alliance members, supporting patients and caregivers, and working to close the gaps in unmet needs across the global GI cancer community. That last part, closing gaps, is no small thing. The unmet needs in GI cancer are real and they’re serious, and having someone with Vanessa’s combination of survivor perspective and navigational expertise focused on that work is genuinely exciting.

Find Vanessa on LinkedIn and give her a well-deserved congratulations: linkedin.com/in/vanessa-ghigliotty-cpn-69974736/

Gretchen A. McNally, PhD, MPH, ANP-BC, AOCNP — Where Research Gets Real

Gretchen McNally has credentials that could fill a business card twice over, but what caught my attention this week wasn’t the alphabet after her name. It was the genuine joy in her voice when she talked about being included in a SWOG Cancer Research Network brainstorming session on Symptom Management and Survivorship.

“I feel so incredibly lucky,” she wrote. And I believe her.

That kind of enthusiasm about collaboration in research, the operationalization of research ideas, as she put it, is exactly what the field needs more of. It’s easy to get cynical about how slowly research moves, about the gap between a promising idea and something that actually helps a patient sitting in a waiting room. But people like Gretchen are the ones who live in that gap, who find meaning in it, and who help push ideas across the finish line.

SWOG’s Symptom Management and Survivorship work is critically important. Survivorship isn’t just about living, it’s about living well, and the symptom burden that cancer survivors carry is chronically under-addressed. Having passionate, clinically grounded advocates like Gretchen at the table for those conversations matters.

Follow her work on LinkedIn: linkedin.com/in/gretchenannemcnally/

Rebekah Cutting — From the Ambulance to the Foundation

Some people come to patient advocacy through illness. Some come through loss. And some come through seventeen years of showing up in the hardest possible moments, like Rebekah Cutting, a paramedic with the South Australian Ambulance Service who has just joined the Ryan Bowman Legacy of Care Foundation.

Rebekah brings frontline emergency care experience that most advocates simply don’t have. She knows what it looks like when the medical system meets a human being at their most vulnerable, because she has been the person responding to that call. She’s developed what the Foundation describes as a deep passion for compassionate, patient-centred healthcare and a profound respect for dignity, comfort, and connection at the end of life.

The Ryan Bowman Legacy of Care Foundation does meaningful work at the intersection of palliative care and community support, and adding someone with Rebekah’s hands-on clinical and advocacy background to that team is a genuine asset. There’s something powerful about a paramedic who has held the space at the end of someone’s life choosing to keep doing that work — just in a different form.

Follow the Foundation’s work on LinkedIn: linkedin.com/company/the-ryan-bowman-legacy-of-care-foundation/

That’s your This Week in Advocacy. Three people doing the work, in three very different ways, all pointing in the same direction: toward patients, toward dignity, toward a world where no one has to navigate this alone.

If you’re not already subscribed to Advocacy at Work, this is a great moment to change that. And if you know someone who deserves to be featured here, an advocate doing something worth celebrating, send them my way. Nominate someone for next week by filling out this form, replying to this post or reaching out through advocacyatwork.com. I want to hear about the work you’re seeing in your corner of this community.

Almost none of them set out to become one.

Scott K. Johnson is a perfect example. He’s lived with type 1 diabetes since the age of five, back when it was still called juvenile diabetes, before we understood that this autoimmune condition can strike at any age. He didn’t grow up planning a career in advocacy. He just got to a point in his young adult years where he was wrestling with the emotional weight of living with a chronic illness, couldn’t find the resources he needed, and decided to start talking about it.

He started a blog. He found his people. And one thing led to another.

Sound familiar?

Advocacy as therapy

One of the things I love most about these conversations is the honesty. Scott didn’t frame his early blogging as impact work or community building or any of the language we now use around patient advocacy. He described it as something much simpler: he needed people like him.

Not the inspirational stories of professional athletes crushing it despite a diagnosis. He needed the everyday people, the ones struggling to take their kids for a walk without interruption, to mow the lawn without their blood sugar throwing everything off. The ordinary, relatable, I’m not doing this perfectly either kind of people.

And when he found them, something shifted. The things he thought were personal failures: struggling to accurately count carbohydrates, getting the insulin math wrong after all these years, turned out to be nearly universal experiences. That realization alone was healing.

I said it on the episode and I’ll say it here: I keep finding that for most of us, whatever form our advocacy takes, it starts as therapy. It started that way for me too.

You don’t have to do it all

Scott said something that I think every advocate, new and experienced, needs to hear:

You can’t do all of it. And that’s okay.

Advocacy isn’t one thing. There’s legislative work, research advocacy, awareness building, fundraising, peer support, storytelling. I write about four distinct buckets in From Patient to Advocate, and I’ll be honest, fundraising is one of them and it’s the one I barely touch. It just doesn’t fill my bucket the way legislative and research advocacy do.

Scott’s the same way. He’s never been one to obsess over website traffic or social media metrics. He measured impact the old-fashioned way: did something I said reach someone? Did they tell me? Did I run into them at a conference and see it in their face?

That’s enough. That has always been enough.

The hospital room phone call

I shared a story in this episode that I don’t tell often enough.

I was recovering from my liver transplant, three years ago now, in the transplant wing. The medical team had been very clear: no work for six months. And there I am on my cell phone, talking for half an hour with another colorectal cancer patient who was pursuing a liver transplant himself. Answering his questions. Connecting him with my transplant surgeon. Doing exactly what they told me not to do.

My nurse waited the whole time. She heard everything.

When I hung up, I looked at her and said: This is the best medicine I can have.

Happy to report that man received his transplant about a year ago and is doing well.

There is no metric for that. There is no dashboard that captures what that phone call meant to either of us. And Scott agreed — advocacy, at its best, becomes a self-feeding loop. You receive help, you heal, you give it back. Around and around it goes.

What Scott is working on now

Today, Scott channels most of his energy into Blue Circle Health, the nonprofit organization where he works. Blue Circle Health provides free care, education, and peer support to adults living with type 1 diabetes. The organization is currently available in 20 states and continuing to grow.

If resources were no object, Scott’s wish is straightforward: he wants every person living with diabetes to have access to the medicines and devices that already exist and are already proven to work. Not a cure, though progress is being made there too, just access. That’s it. The tools are there. The barrier is access.

It’s a quiet but urgent kind of advocacy. And it’s very much his lane.

You can find Scott’s blog — still up, still worth reading — at scottsdiabetes.com, and learn more about Blue Circle Health at bluecirclehealth.org.

And if this conversation resonated with you, whether you’re living with diabetes, supporting someone who is, or just figuring out what your own advocacy lane looks like, I’d love to hear from you.

Subscribe to Advocacy at Work at advocacyatwork.com so you never miss an episode or a post. And if you know someone who needs to hear this one, share it with them.

That’s the whole point, after all.

— Tim

"Kirk Triplett wearing my name at the Cologuard Classic — a reminder that this work has never been mine alone."

I’m not publishing a new episode this week.

Not because there’s nothing to say. I have two conversations recorded and ready to go that I genuinely can’t wait to share with you. One is about Type 1 Diabetes. One is about traumatic brain injury. Both reminded me why I started this podcast in the first place.

But with Memorial Day weekend here, I’m giving us both a pause. A chance to breathe, to reflect, and if you’ve missed anything along the way, to catch up.

When I launched Advocacy at Work last fall, I had a single conviction: the real work of advocacy is happening everywhere — in hospital waiting rooms, at bathroom floors after chemo, at Pride festivals, in rural Appalachian communities, in Congressional hearing rooms, at 5K start lines — and my job was simply to find the people doing it and get out of the way.

Thirteen episodes later, I’m more convinced of that than ever.

Here’s what we’ve covered so far. Each one links directly to the episode. I hope you’ll share anything that resonates with someone who needs it.

Beyond Policy: How Corporate Advocacy Drives Real Change in Colorectal Cancer Screening Bryan Goettel, Director of Advocacy & Alliance Relations, Exact Sciences — November 2025

The episode that opened the season. Bryan helped me put words to something I’d long felt: a for-profit company can be a genuine partner in advocacy when the mission alignment is real. We talked about what the Cologuard Classic has built, how Exact Sciences approaches the advocacy community, and what it costs emotionally to build relationships in a space where people die. “The pain of losing somebody,” I told him, “is only eclipsed by the joy of knowing them.”

From Surviving to Serving Liz Healy (in Memory) — December 2025

Liz was hit by an out-of-control skier on a Vermont mountain in 2022. The imaging for a broken tailbone revealed kidney cancer, and a fourth surgeon at Memorial Sloan Kettering caught what three others had missed: stage four colorectal cancer already spread to her liver and lymph nodes. She was given a 7% chance of living five years. Three and a half years later, she’s run the New York City Marathon while on treatment, enrolled in a clinical trial at Mass General, and built a team of 20 runners whose lives have been touched by colorectal cancer. Her definition of advocacy: “Turning pain into purpose.” This one sets the tone for everything that follows.

The Long Game of Advocacy Anjee Davis, CEO, Fight Colorectal Cancer — January 8, 2026

Anjee has been leading Fight CRC long enough to watch the community go from support groups too embarrassed to fill a room to hundreds of advocates walking the halls of Congress. She helped pass the colonoscopy loophole bill — a ten-year effort. She built the Colorectal Cancer Care Report so that funders follow the mission, not the other way around. The line I keep coming back to: “If someone had said you shouldn’t do it in year one because you didn’t move it forward, we wouldn’t have had that passed.” The long game is the only game.

Finding Your Lane JJ Singleton — January 15, 2026

JJ was 27 when he was diagnosed with colorectal cancer, and he spent years on the bathroom floor after chemo watching athletes talk about overcoming adversity on TV. “Nobody ever shows this part,” he thought. A clinical trial saved his life. Then he discovered advocacy, almost by accident, saying yes to a 15-minute Zoom call that opened into an entirely different world. His focus is rural Appalachia: the communities that can’t reach a comprehensive cancer center, where nobody talks about the mental health spiral that nearly killed him faster than the cancer. He posts about the bad days, the suicidal thoughts, the ugly parts. He also breaks down something most advocates never discuss: how to make advocacy financially sustainable when you’re on Medicare and Medicaid.

Preventing Cancer Before It Happens Erin Peterson, Senior Director of Mission and Partnerships, Colon Cancer Coalition — January 22, 2026

Erin runs the mission side of the Colon Cancer Coalition, the organization behind Get Your Rear in Gear, now 40 events a year across North America and the Bahamas. What makes it work is how it grew: not through top-down corporate strategy, but by waiting for someone in a new city to raise their hand and say “I want to do this here.” Erin makes a point that stops you cold: colorectal cancer is one of the only cancers we can actually prevent — not just detect early, but prevent — by removing precancerous polyps. And the barriers to screening are rarely medical. They’re transportation, childcare, time off work, and the cost of bowel prep.

From Stage Four to a Movement Trevor Maxwell, Founder, Man Up to Cancer — January 29, 2026

Trevor was 41 when he was diagnosed with stage four colon cancer and began withdrawing from everyone he loved. He noticed that in every support space he entered, the ratio was the same: three women for every man. Men weren’t showing up to ask for help. They were isolating instead. So he built something specifically for them. Man Up to Cancer now has 40 chapters across North America, an annual Gathering of Wolves retreat, and a Chemo Care Backpack Program, all completely free to men in the cancer community. His definition of an advocate: “A role model.” I serve as Florida Chapter Leader for Man Up to Cancer, and this conversation meant a great deal to me personally.

Building Careers and Movements Michael Holtz — February 5, 2026

Michael has been doing cancer advocacy work for 23 years, longer than most people in the space realize. It started professionally at the American Cancer Society. It became personal when he was diagnosed with stage three rectal cancer in 2012, and he went fully public: diagnosis, treatment, life with an ostomy, all of it. Over two decades he’s run four forms of advocacy in parallel: media, legislative testimony, research peer review, and now as board chair of Man Up to Cancer. His north star after all of it: “That one day kids will ask, what the heck was cancer?” He also carries the names of those he’s lost on the back of his shirt, including his dear friend Ryan, who died pursuing a clinical trial. He doesn’t look away from that part of the work.

From Isolation to Impact Allison Rosen — February 19, 2026

Allison was 32 and in the best shape of her life when she was diagnosed with early-onset colorectal cancer. She went looking for a young adult support group at MD Anderson, one of the nation’s premier cancer centers, and found that one didn’t exist. So she helped create it. Thirteen years later she’s one of the most thoughtful voices in research advocacy, and she’s given us a frame I’ve been thinking about ever since: “Lived Experience Expert.” After the names on our charts, she says, it should read LEE. We didn’t get a PhD, but we are experts in our experience, and that expertise belongs at the research table from the very beginning, not as a checkbox at the end.

The Power of Showing Up Casie Shimanski, Founder, Team Live Out Loud — February 26, 2026

Casie has raised nearly $200,000 for children’s cancer research through St. Baldrick’s Foundation — one year, one ask, one shaved head at a time. She’s been a top fundraiser for eight consecutive years. When people ask how she does it, they want an easy answer. Casie’s answer is harder: consistency. “Most people don’t want to hear that,” she says. “They want the easy answer and there’s not one.” She first raised $600. She didn’t even shave that year. She just showed up. That’s still the whole strategy.

Speaking About the Unspeakable Marielle Santos McLeod, Director of Strategic Programs, Cancer Hope Network — March 19, 2026

Marielle is nine years out from her colorectal cancer diagnosis and has made it her life’s work to break the cultural silence that costs Latino lives. We talked about what it takes to make colonoscopy prep a normal topic in communities where talking about it — let alone cancer — is simply not done. “We don’t talk about things like these,” she says. “Oftentimes as Latino patients we’re diagnosed automatically at later stages.” She’s also one of the sharpest minds in clinical trial advocacy I’ve encountered, and she carries with her a message for every patient: know your biomarkers from day one. Don’t wait to be told.

Beyond “Just a Rash” Nora Eigenbrodt, Associate Director for Grassroots Advocacy, National Eczema Association — April 2, 2026

Thirty-one million Americans have eczema. Most of the world thinks it’s a minor inconvenience. Nora is working to change that, through a three-track ambassador program spanning legislative work, community engagement, and research literacy. She also told me something I didn’t know: through sustained advocacy, the National Eczema Association got eczema added to the Department of Defense’s Peer Reviewed Medical Research Program for FY25 and FY26. That’s not a small thing. That’s the long game paying off. Her reminder: Congress is a marathon, not a sprint.

From Butt Pics to Public Health David Russo, Founder, Cheeky Charity — April 16, 2026

David built a movement out of a converted Sprinter van, a cross-country road trip through national parks, and a willingness to post cheeky photos of himself on Instagram paired with public health messages. What started as a quirky personal project is now a 501(c)(3) nonprofit with a Butts and Badges program that has put 15,000 pins on healthcare providers across the country, a growing Pride Festival presence, and a new education platform at ScreenYourButt.org. He is also, by his own admission, a very large introvert. Which honestly makes the whole thing even better.

When Your Child’s Diagnosis Becomes Your Calling Jessica Cella — April 30, 2026

Jessica’s son was diagnosed with primary adrenal insufficiency at Rady Children’s Hospital in San Diego in January 2019. She was told that if he ever went into an adrenal crisis, the paramedics who responded couldn’t give him the medication he needed — they couldn’t administer it. So she trained 1,100 paramedics. Then she worked with San Diego to develop a brand-new protocol that takes effect July 1st of this year. She was named 2026 California Senate District 40 Woman of the Year. She told me something I’ve been sitting with since: “I don’t actually advocate for my son. I advocate for children and families who don’t have the luxury my family has.” She didn’t need Capitol Hill to save lives. She needed her neighborhood.

What’s Coming Next

We’re back next week with two conversations I’ve been looking forward to sharing, one focused on Type 1 Diabetes advocacy and one on traumatic brain injury. Both reminded me that the wound really does become the wisdom, and the wisdom really does become the work.

If you’ve been here since the beginning, thank you. If you’re finding this for the first time, start anywhere, every episode stands on its own. And if you know someone who needs to hear any of these stories, please share.

Enjoy the long weekend. I’ll see you on the other side.

— Tim

I was a guest on Darrell’s podcast, Breaking Mental Health. Here’s what I couldn’t stop thinking about after.

There’s a question Darrell asked me early in our conversation that I’ve been sitting with ever since.

“At any point during the whole cancer thing, did reality actually set in for you?”

It’s a deceptively simple question. And the honest answer is complicated, because yes, reality set in. I knew I had a terminal disease. I knew the five-year survival rate for Stage IV colorectal cancer was 13%. I knew I might not be here for too long.

But here’s the part that’s harder to explain: knowing all of that, and still choosing to live in the moment anyway, isn’t denial. It’s a decision.

I was a guest recently on Breaking Mental Health, a podcast hosted by Darrell, who is one of those rare interviewers who actually listens. Not just to what you say, but to what you're trying to say underneath it. He's also someone who speaks openly about his own struggles with depression and anxiety, and that kind of honesty creates a space where you can be equally honest back.We talked for a while, and I want to share a few moments from that conversation, not because I said anything new, but because sometimes hearing your own story reflected back to you reveals something you hadn’t fully named yet.

On the diagnosis itself

When the urgent care doctor told me I had cancer, I was so calm that he asked if he should call my wife to come get me. I wasn’t in shock. I wasn’t numb. I had spent nearly a decade practicing mindfulness and meditation, and in that moment, all of it kicked in.

My first honest thought was: What do we do next?

My second thought was: How am I going to tell my wife when I get home?

That second one was harder.

On the only statistic that mattered

I threw out almost every number they gave me. Except one.

13%. That’s the five-year survival rate for Stage IV colorectal cancer patients.

Most people hear 13% and think: small. I heard 13% and thought: I am going to be one of those people. I knew other men had made it. They were the reason I believed I could. And so I latched onto that number not as a ceiling, but as a club I was going to join.

On the dark thoughts — and where they went

There’s something I shared on the podcast that I don’t always say out loud: there were moments during chemo where the cumulative fatigue — physical, mental, emotional, all of it stacked on top of itself — got to a place where I wondered if it was worth it.

I never got to the point of saying no. But those thoughts existed. And I think it’s important to say that, because pretending they didn’t doesn’t help anyone who’s having them right now.

What helped me was having Man Up To Cancer, a men’s cancer group, where I could let those thoughts out the moment they arrived. Not hold them, not analyze them, not carry them — just release them into a space where someone else would say I know exactly what you feel. And then they’d be gone. I’d be back.

That outlet wasn’t optional for me. It was survival.

On being the 13% for someone else

It took me almost two years after reaching No Evidence of Disease before I could walk back into a support community without feeling like a fraud. I thought: What do I have to offer someone who’s in active treatment right now?

It took a therapist. It took other survivors. And eventually, it took someone going through chemo looking me in the eye and saying, Tim, you are giving me hope.

I had been so inside my own head, worrying about how others would judge me for being there, that I had forgotten the only reason I believed in that 13% was because someone else had already made it there before me. They showed up for me without knowing it. I owed that to the next person coming in.

I could keep going, but that’s exactly why you should listen to the full episode.

Darrell asks questions that go places most interviewers don’t — vulnerability, mortality, how men process fear differently, what cancer taught me about who actually belongs in your life. We talked about traveling during treatment, meditation that doesn’t look like meditation, and what it means to be open to receiving help in whatever language someone offers it.

🎙️ You can find Breaking Mental Health Podcast wherever you listen to podcasts. The episode is called “What Happens Mentally When You’re Told You May Be Dying.” Give it a listen, and if it moves you, share it with someone who needs it.

And if any of this resonates with your own story, as a patient, a caregiver, or someone quietly wondering if they’re going to be okay, my inbox is always open.

The wound becomes the wisdom, and the wisdom becomes the work.

— Tim

Tim McDonald is a colorectal cancer survivor, patient advocate, and author of From Patient to Advocate: Turning Survivorship Into Impact. Find him on Substack at advocacyatwork.com and on LinkedIn.

There’s something different about being interviewed by someone who actually listens.

I’ve done a lot of podcast appearances since From Patient to Advocate launched in March, and most of them follow a predictable arc. The host skims the book description, asks a few surface-level questions, and we wrap up in 20 minutes. That’s fine. I understand it. Everyone’s busy.

But my recent conversation with Dr. Timothy J. Hayes on On Your Mind was something else entirely.

We went places I didn’t expect to go. We talked about what it felt like to be told there were no options, and what it took to refuse that answer. We talked about mental health in survivorship, which is still one of the most underdiscussed parts of the cancer experience. And we talked about something I find myself navigating constantly: what do you do with the weight of losing people in this community?

That last part, I think about it a lot. When you’re an advocate long enough, loss becomes part of the job. People you’ve walked alongside, people who fought just as hard as you did, people who deserved more time. I’ve developed a framework for how I hold that grief without letting it hollow me out, and I shared it openly in this conversation in a way I haven’t in many other interviews.

We also got into the living donor liver transplant path I pursued, a chapter of my story that a lot of people don’t know, and what it truly means to become the “general manager” of your own care. That concept is at the heart of the book, but hearing it out loud in conversation, I was reminded why it matters so much. Patients are not passive recipients. We are the ones who have to hold the whole picture together.

If you’ve been wanting to get a feel for the book before diving in, or if you just want to hear this work in conversation form, I think this episode is a good place to start.

▶️ Watch on YouTube

Or listen on iTunes

Or find On Your Mind with Dr. Timothy J. Hayes wherever you listen to podcasts.

From Patient to Advocate: Turning Survivorship Into Impact is available now on Amazon. If it’s resonated with you, a review goes a long way, and sharing this post with someone who might need it means even more.

Every May, the graphics start appearing.

Soft colors. Gentle fonts. “It’s okay to not be okay.” Reminders to check on your strong friend. Statistics about one in five Americans living with a mental health condition. All of it well-intentioned. Most of it true. And almost none of it reaching the people who need it most.

I’m not here to dismiss the awareness. The stigma around mental health is real, and any conversation that chips away at it has value. But after five years of living inside the cancer and patient advocacy world, and considerably longer sitting with my own mental health, I’ve come to believe that the way we talk about this month is missing something important.

It’s too clean. Too resolved. Too much before-and-after, and not enough during.

The Mental Health Nobody Photographs

Here’s what a mental health awareness post rarely looks like:

You’ve been in remission for two years. You’re doing meaningful work. People call you inspiring. You speak at conferences. You wrote a book. From the outside, you have more than survived — you’ve built something.

And then on a Tuesday afternoon, you get a message that someone from your community didn’t make it. Someone you’d spoken with, encouraged, watched fight. You read the message. You set your phone down. You go make a cup of coffee, because you don’t know what else to do with it.

That’s survivorship. That’s advocacy. That’s also a mental health experience that doesn’t fit neatly into awareness month messaging.

I’ve written about the grief that comes with this work before, specifically the toll that loss takes on advocates who are doing the emotional labor of walking alongside people through some of the hardest moments of their lives. → Read: The Hidden Cost of Patient Advocacy: Grief, Burnout, and Survivorship

What I didn’t fully understand when I started was how cumulative it gets. Each loss lands differently. And the longer you do this work, the more relationships you’ve built, which means the more loss you experience. That isn’t a reason to stop. But it is a reason to be honest about what the work actually costs.

When the Hard Part Doesn’t End When Treatment Does

One of the things I’ll be talking about in my Bloom TV appearance later this month is the survivorship gap. The strange, disorienting space that opens up after active treatment ends.

While you’re in treatment, there’s a structure. Appointments. Protocols. A team. People checking in. The medical system, for all its gaps, gives you a roadmap.

And then treatment ends, and everyone celebrates, and you’re supposed to feel relief — and sometimes you do. But often, underneath the relief, there’s something else. Anxiety about recurrence. Grief for the person you were before diagnosis. A kind of identity vertigo. Who am I now? What do I do with all of this?

Most mental health awareness messaging doesn’t reach that person. It speaks to the person who hasn’t yet acknowledged they’re struggling. But what about the person who did the work, got through it, built a life on the other side — and still has hard days? That person exists too. I am that person sometimes.

The survivorship mental health conversation deserves its own language. It isn’t the same as the pre-diagnosis conversation. It lives in a different part of the body.

What It Takes to Actually Get Better (And It’s Probably Not What the Posts Say)

I want to be specific here, because vague self-care advice is part of the problem.

Therapy helped me. I don’t say that casually, I say it as someone who resisted it, who thought I could process everything through reflection and writing and forward motion. I was wrong. Having a skilled, qualified person help me understand my own patterns, my grief, my relationship to control and vulnerability — that changed things. It didn’t fix everything. Nothing fixes everything. But it gave me tools I didn’t have before.

A decade of mindfulness and meditation practice helped me. Not the app-based, five-minute version (though there’s nothing wrong with that as a starting point). The kind that becomes a genuine daily practice, that teaches you to sit with discomfort rather than immediately trying to solve or escape it.

Community helped me — specifically, the right community. This is where Man Up to Cancer changed my life in ways I’m still processing. Finding a room full of men who were living with cancer and not pretending otherwise. Men who cried and said “I love you” and showed up for each other. Not despite their strength — as an expression of it.

→ Read: More Than an Event: Reflections from Gathering of Wolves 2025

And losing people, really sitting with it rather than rushing past it, helped me understand something that took years to learn: I don’t have to be angry at cancer for bringing Chuck and Lee into my life in order to be angry that it took them. The grief and the gratitude can live together. The wound, over time, becomes the wisdom. And the wisdom becomes the work.

The Men in the Room (Or Not in the Room)

I’d be leaving something important out if I didn’t name this directly.

Mental Health Awareness Month, in its current form, largely doesn’t reach men. Not because men don’t need it, the data is staggering on that front, but because the way it’s packaged doesn’t connect with how most men have been taught to think about themselves.

As many as 70% of young men avoid mental health services entirely. The research on traditional masculinity and health behavior is consistent: the “be strong, handle it yourself, don’t show vulnerability” script is deeply internalized, and it keeps men from getting help long before it keeps them from advocacy.

I felt that pull myself. When I was first diagnosed, my instinct was to research alone, process quietly, present the composed version to everyone around me. What broke through wasn’t a social media graphic. It was other men, specifically men who had gone before me, who modeled what it looked like to be open and strong, honest and resilient.

If you’re a man reading this, and mental health month has always felt like it was speaking to someone else: it’s speaking to you. The way you access it might look different. Community before clinical, sometimes. Story before statistics. But you deserve support as much as anyone.

What I Actually Want From This Month

I want the conversation to go deeper.

I want it to reach the cancer survivor two years out who is quietly struggling and doesn’t think they’re allowed to say so anymore. I want it to reach the advocate who is burning out from carrying other people’s pain without ever being asked how they’re doing. I want it to reach the man who won’t call a therapist but might show up to a retreat if another man he respected invited him.

I want the messaging to make room for the during — not just the before and after.

And I want it to be honest about what helps. Not just “reach out if you need help” — but here’s what reaching out looked like for me, and here’s what changed.

If you’ve been doing this work — advocacy, caregiving, survivorship — and you’re tired in a way that sleep doesn’t fix: that’s a real thing. It has a name. And it doesn’t mean you’ve failed at any of this. It means you’ve been paying attention.

If you want to go deeper on building sustainable advocacy practices — including how to handle burnout, loss, and the emotional weight of the work — my book From Patient to Advocate: Turning Survivorship Into Impact has a full section dedicated to exactly this. It’s the guide I wish I’d had.

Tim McDonald is a stage IV colorectal cancer survivor, liver transplant recipient, and patient advocate. He is the Florida Chapter Leader for Man Up to Cancer, a Research Advocate with Fight Colorectal Cancer, and the host of the Advocacy at Work podcast.

January 10th, 2019. That’s the date Jessica Cella’s life changed forever.

Her youngest son was diagnosed with primary adrenal insufficiency at Rady Children’s Hospital in San Diego. The diagnosis came with a sentence that would stay with her: “rare condition.” And then came the kicker that would fuel years of advocacy work: the hospital told her that if her son went into an adrenal crisis, San Diego Fire Rescue paramedics couldn’t give him the medication he needed. They didn’t carry it. Not a single ambulance in the city had it.

Jessica describes the feeling with a vivid metaphor: “I felt like my husband and I were standing on the island of Hawaii. There was nobody else coming. We were all alone.”

That moment, that isolation, that helplessness, didn’t break her. It mobilized her. Seven years later, Jessica was honored as the California Senate District 40 Woman of the Year for her work. But more importantly, she’s helped change the emergency medical landscape in San Diego in ways that are directly saving lives.

Her story is a masterclass in something we don’t talk about enough in advocacy: the power of starting small, thinking locally, and building genuine impact in your own community.

Understanding Adrenal Insufficiency (The Simple Version)

Jessica often tells people: “To manage it day to day, it’s very complex, but in an emergency situation, it’s very simple.”

Here’s the layman’s version: Your adrenal glands produce cortisol and aldosterone—hormones that help your body respond to stress. When you face something scary or stressful, your body has a “fight or flight” response. Cortisol helps you survive that stress.

People with primary adrenal insufficiency don’t have working adrenal glands. Their bodies can’t produce cortisol on their own. So they need to take steroids every day, three times daily in Jessica’s son’s case, to replicate what healthy adrenal glands do naturally.

But here’s where it gets dangerous: when stress hits, illness, injury, even the flu, their bodies can’t ramp up cortisol production like yours and mine can. That’s when you need an emergency injection of Solu-Cortef, a specialty steroid. Without it, an adrenal crisis can be life-threatening.

Jessica’s son carries this medication with him everywhere. But for years, if he’d gone into crisis in San Diego, the paramedics who arrived couldn’t administer it.

The Island of Isolation: Realizing You’re on Your Own

When Jessica left the hospital that January day, she faced a reality that every parent of a chronically ill child knows: the vast majority of your child’s care now falls on you.

At eight years old, her son needed her to be an expert on a condition she’d never heard of. She needed to know the signs and symptoms. She needed to manage his medications. She needed to always have Solu-Cortef injections ready—in the house, in the car, in emergency kits. She needed to understand what an adrenal crisis was and how to respond.

“That’s a lot of pressure on a family,” Jessica reflects. But that pressure also became her motivation.

The turning point came when she attended a conference with other adrenal insufficiency patients. She talked to about 200 people personally. What she learned was sobering: for most people, it took three to five years on average to get diagnosed with adrenal insufficiency. Many had received terrible care at hospitals or from endocrinologists. Horror stories vastly outnumbered success stories.

That’s when Jessica realized something crucial: they actually had a success story. They had gotten the right diagnosis, the right doctor, the right hospital. Many others hadn’t.

“I realized at that moment that we actually had a success story. Obviously as hard as it was that my son was diagnosed with a rare condition, we had a lot of things that went right,” she says. “And I think there’s a part of me that feels a little bit guilty about that, and I want to make sure that I lessen the burden on other caregivers.”

That guilt, that awareness of privilege in the midst of crisis, became the seed of her advocacy work.

Starting Small: Emergency Kits and Filling Local Gaps

Here’s what I love about Jessica’s approach to advocacy: she didn’t try to save the world. She identified a specific gap and filled it.

After her son’s first year of diagnosis, she noticed that many newly diagnosed patients didn’t know what an emergency kit should contain. They didn’t know where to get the supplies. Many struggled to get the needles they needed, and a Solu-Cortef injection without needles is useless.

“I can’t save the world. I can’t save everybody,” Jessica told herself. “But I’m going to carve out this little piece of a gap that I’ve identified that I think I can give back to the community in this small way.”

She started helping newly diagnosed families create emergency kits. She organized local meetups and roundtables. She connected patients and families. It wasn’t glamorous. It didn’t make headlines. But it saved lives.

Then she started getting messages from families years later: “Jessica, we still use the emergency kit you helped us create five years ago. Thank you so much.” Or: “My son went into an adrenal crisis and we were prepared because of you and because of the training that you’ve done.”

Those messages, that direct feedback from people whose lives she’d touched, became more powerful than any award.

“I think the smaller wins that keep us going are really at the patient grassroots level,” Jessica says. “Those little things when you hear from the community specifically, I think probably power me more so than standing on Capitol Hill advocating or getting Woman of the Year.”

This is crucial for anyone thinking about advocacy: you don’t need Capitol Hill to make a difference. Sometimes the most impactful work happens in your living room, at a local hospital, or in conversations with families who are where you once were.

The Paramedic Protocol Victory: Local Change That Saves Lives

Jessica’s biggest win, the one that earned her Woman of the Year recognition, shows what happens when you commit to a specific, achievable goal.

She identified a clear problem: San Diego Fire Rescue paramedics couldn’t administer the steroids that adrenal insufficiency patients need in an emergency. She partnered with six endocrinologists across the country and conducted training for 1,100 paramedics in San Diego on how to administer a “patient’s physician prescribed medication”.

Then came the real victory: she worked with San Diego County to develop a brand new protocol that allows paramedics to administer patient’s physician prescribed for children ages zero through 13. That protocol will go live on July 1st, 2026.

“Protocols are very hard to put into place,” Jessica notes. And she’s right, changing emergency medical protocols is bureaucratic, time-consuming, and requires sustained effort. But she did it. In her community. Where it matters most.

Think about what that means: a child with adrenal insufficiency who goes into crisis in San Diego now has paramedics trained to help them. A protocol is in place. Lives will be saved.

That’s not small. That’s transformational.

The Landscape Shift: Pharma Companies as Resources (Not Villains)

When Jessica’s son was first diagnosed in 2019, there was only one pharmaceutical company involved in the adrenal insufficiency space: Pfizer. Today, there are several, which means more treatment options for patients—and, importantly, more resources.

Jessica is thoughtful about this evolution. She welcomes pharmaceutical partnerships while being clear-eyed about what they are. “More therapies is always a good thing, always options for patients. And in addition to that, it can also be a resource for patients,” she explains.

The adrenal insufficiency nonprofit community is small. There are only about three nonprofits in the space, running on approximately $150,000 per year each (except for one larger organization). With such limited resources, partnerships with companies that can provide funding, education materials, and research support genuinely help.

“Resources are scarce,” Jessica acknowledges. “And so it’s really tough to move the needle when you don’t have a lot of those resources. And so I think that was when things shifted a little bit is when the pharmaceutical companies came into the picture and were able to help some of those nonprofits from a resource standpoint.”

This is a nuanced view of advocacy that doesn’t fit neatly into ideology. Yes, pharma companies have profit motives. But they also have resources that can genuinely help rare disease communities. The question isn’t whether to partner with them, but how to do so authentically and transparently.

The Personal Foundation: A Mother’s Determination Born From Her Own Scarcity

Near the end of our conversation, Jessica shares something deeply personal: she was raised by a single mother who struggled with drugs and alcohol. She grew up without resources. She didn’t have access to top hospitals or specialists.

“If I had adrenal insufficiency when I was younger, my mom didn’t have a college degree and she didn’t have the resources to send me to a Rady Children’s or have the top endocrinologist,” she reflects.

This history informs everything she does. She doesn’t advocate for her own son—he has resources, a supportive two-parent household, access to excellent care. She advocates for the children and families who don’t have that luxury.

“I always tell my son, I don’t actually advocate for my son,” Jessica says with clarity. “I advocate for children and families and patients who don’t have that luxury that my family has. And like I said, growing up that I didn’t have.”

This is the beating heart of authentic advocacy. It’s not guilt. It’s not charity. It’s recognition that some people have been handed advantages, and using those advantages to level the playing field for others.

The Magic Wand: A Vision for Emergency Response Across America

If Jessica could wave a magic wand, and this is her phrase, her “magic wand list,” what would she change?

She’d ensure that EMS agencies across the entire country have education and protocols for adrenal insufficiency. She’d make sure that paramedics at least know what the condition is and can respond appropriately. She’d eliminate the “transport only” agencies that currently just move patients to hospitals without being able to administer emergency medication.

“Unfortunately right now there’s a lot of areas that are transport only, and that’s how we’re losing patients is that they’re just being transported and they’re losing their life in transport,” she says.

The parallel to rural healthcare challenges is stark. In rural areas, where specialists are scarce and resources are limited, a child with adrenal insufficiency faces exponentially greater risk. Jessica knows this. She’s working on it. And she’s not waiting for the federal government to move. She’s doing it city by city, region by region.

The Real Power of Local Advocacy

What strikes me most about Jessica’s story is this: she’s accomplished something tangible in her community that many advocates spend years chasing at the federal level.

I made a powerful observation: “You talk about making change in your neighborhood, in the city and the county where you live. And I think that’s just so important for people to understand.”

There’s a Capitol Hill in almost every state. There’s a county health department in every county. There are school boards and city councils and hospital protocols. These institutions determine how care is delivered, how emergencies are handled, how patients are treated.

Jessica didn’t need to change federal law to save lives. She needed to train paramedics, develop protocols, educate hospitals, and connect families. She did that work. And it’s working.

“I can’t save the world, but I’m going to carve out this little piece,” she said. And then she did.

For anyone thinking about getting involved in advocacy, that’s the invitation: you don’t need a massive platform or unlimited resources. You need a problem you’ve identified, a community you care about, and the willingness to show up consistently.

How to Get Involved

If Jessica’s work resonates with you, here’s how you can learn more:

• Connect with local adrenal insufficiency support communities and nonprofits

• Reach out to your county or city health department about gaps in emergency preparedness

• Talk to paramedics and emergency responders in your community about rare diseases and how to respond

• If you or a loved one has adrenal insufficiency, consider mentoring newly diagnosed families—that personal connection is invaluable

• Advocate locally for protocol changes and training initiatives that can save lives in your community

Final Thoughts

Jessica Cella’s story is a reminder that advocacy isn’t just about speaking at Congress or testifying before committees. It’s about identifying problems in your community and solving them. It’s about turning the isolation you felt into a bridge that helps others not feel alone.

Her son’s diagnosis was devastating. But Jessica transformed that devastation into something concrete: emergency kits that save lives, paramedics trained to respond, protocols in place, families supported.

That’s not small. That’s the entire point.

And it all started because one mother, standing alone on an island, decided she wouldn’t let other families feel that way.

Have your own story of local advocacy impact? Or are you thinking about getting involved in your community? Share in the comments—I’d love to hear from you.