There’s a question I keep coming back to this week, and it’s not mine. I’ll credit it in a minute. But it’s the kind of question that makes you stop mid-scroll and actually think: what am I doing right now, advocating or activating? And is the moment asking for something I haven’t fully stepped into yet? I don’t have a clean answer. But three people this week gave me a lot to work with. Here are the advocates I’m spotlighting in Vol. 12.

Tonia Yelder LinkedIn

This week, Tonia Yelder signed her name on the final beam of a new cancer center at KU. She’ll frame it modestly — she works there, she’s an MPH student, it was a meaningful milestone for the institution. All of that is true. But she also did it as a survivor. And I need you to sit with that for a second, because I think it’s easy to scroll past. Tonia put her name on the steel that will hold up a building where thousands of people will one day receive the news that changes everything, and then, if they’re lucky, the treatment that helps them through it. She was once one of those people. Now her name is literally in the structure. That’s not a photo op. That’s not a feel-good story for a press release. That is as full-circle as this work gets, and it deserves to be named out loud. Congratulations, Tonia. What a thing to have your name on.

Beth Wagmeister

Beth Wagmeister asked a question this week that I genuinely haven’t been able to shake: advocate, or activist? It sounds like a semantic debate until you sit with it long enough to realize it isn’t. Beth’s been an advocate for most of her life: educating people, explaining systems, nudging decision-makers toward change. And she’s been good at it. But somewhere along the way she started noticing that suggesting change, when the need is already obvious, starts to feel like a kindness to the people who should already be acting. Her line, “advocacy opens the door, activism walks through it,” is one of those things I wish I’d written myself. I want to be clear: she’s not arguing one is superior. Neither am I. But most of us, if we’re honest, can feel which one a given moment is asking for. And the harder work is usually admitting it when the moment is asking for the one we’d rather not do. Follow Beth on LinkedIn. She’s asking the right questions.

Lindsay Barad LinkedIn

Lindsay Barad found PMP Pals the way most of us find the communities that matter most to us, as someone who needed one. PMP Pals supports people affected by pseudomyxoma peritonei and appendix cancer, which is a rare and often isolating diagnosis. Lindsay walked through that door looking for help. This July, she joined its board of directors. I think about this arc a lot in advocacy: the patient who becomes the resource, the person who came looking for a lifeline and eventually helps hold it out for the next person. Lindsay is bringing her background in marketing and fundraising to this community now, which means more reach, more resources, more people finding PMP Pals before they feel completely alone. There’s something quietly powerful about that. She knows exactly what the community gives you because she received it. Now she’s part of carrying it forward. That’s not a career pivot. That’s a calling.

If you know someone doing work like this: patient advocates, caregivers, community builders, people turning their hardest chapters into something useful for someone else; nominate them. Reply to this post or drop a note at advocacyatwork.com. And if someone forwarded this to you and you want to get it every week, hit subscribe. This community exists because people keep showing up for each other. Thank you for being part of it.

There’s a question that comes up early in most cancer conversations. “Were you having symptoms?”

For Dr. Lawrence Henry, the answer was yes. He had them all. Bloating. Blood in his stool. Pain.

But he also had something else. Twenty-six years of military discipline. A mission-first mindset that had gotten him through jump training, special operations, multiple deployments to Central America, South America, Afghanistan, Iraq, Pakistan.

So he rationalized it. The symptoms were just the fallout from those exotic places. Indigestion from unfamiliar food. Nothing to worry about.

“I rationalized it,” he tells me. “That’s what we do.”

The Colonoscopy He Didn’t Want

In 2019, before retirement, Lawrence had a colonoscopy. They found some polyps. Removed them. Life went on.

He retired in February 2020.

His cancer diagnosis came in 2021.

You know the screening guidelines. Colonoscopies every five years, maybe every three, sometimes every ten. So nothing could really be wrong. He’d just been through a thorough medical physical. The whole out-processing for military retirement. Nothing was coming.

But something kept pushing him. And one day, despite all his resistance (the preparation was the real reason he didn’t want to do it), he finally scheduled a colonoscopy at the Tampa VA.

The day the doctor came back, he didn’t even know what a malignant tumor meant.

He was just worried about the graham crackers and ginger ale. He was starving.

Then it started sinking in. The tumor was trying to break through the organ. It was about to become something much worse.

When a Green Beret Has to Let Go

That’s when everything shifted.

“I’m going to beat it,” he initially said. That’s what Green Berets do. You have an obstacle, you take it down. You don’t sit with it. You eliminate it.

But cancer doesn’t work like a military mission.

And Lawrence had to do something that went against every instinct in his bones. He let go of the mission.

“I gave the mission up to a group of people I did not even know,” he says. “I’ve vetted all kinds of missions over 26 years. I made sure I had the right people, the right equipment, the right funding. But for this mission, the mission of a lifetime, I just gave it up and didn’t ask any questions.”

It was terrifying. It was also necessary.

The Tampa VA team did a wonderful job with his treatment. Surgery first, a robotic laparoscopic procedure to remove the affected portion of his colon and lymph nodes. Then 12 rounds of chemotherapy.

Every other week he’d come in on Tuesday for intravenous treatment. Then they’d send him home with what he calls the boat anchor. That’s the chemo pump he had to carry until the traveling nurse came on Thursday to pick it up. This was during COVID, so everything was careful, cautious, isolated.

The side effects were predictable. Peripheral neuropathy in his hands and feet. Exhaustion.

But around week six, something changed.

The Moment He Advocated for Himself

He noticed he was labored walking up the stairs. His heart was beating hard just from simple tasks. He was sweating a lot.

“No, you’re doing fine,” his oncology team said. “Just keep going.”

He pushed back. “No, I insist. I need a CT scan now.”

When he insisted, the Colonel came back. And when they did the scan, they found blood clots in his legs and his lungs.

The oxyplatin was causing the reaction. They pulled him off it immediately. He’d run his course with Tampa VA.

Moffitt Cancer Center, right across the street, took him in. They laid out his options. Do nothing. Get back on oxyplatin. Try something else. Something different. They informed him. They let him decide.

He finished his chemotherapy at Moffitt.

That moment when he pushed back, when he demanded his own voice be heard, that’s when he realized something crucial. He couldn’t even advocate for himself. And if he couldn’t do it, what about everyone else?

From Colonel to Credible Messenger

After beating cancer, Lawrence could have done what plenty of people do. He could have retired quietly. Lived his life. He’d had a military career. He’d beaten cancer. That’s enough.

But there was something in him that wouldn’t let him sit still.

“The way I couldn’t advocate for myself... how about Larry Henry from East Orange, New Jersey? How about Larry Henry from Long Branch, New Jersey in underserved communities? Who’s helping them?”

He turned himself into what he calls a credible messenger. Not just someone with a story to tell. Someone with lived experience, yes. But also resources. Predictability. Show up on time. Follow through. Be someone people can trust.

“I’m going to tell you my story. Now walk with me. Trust me to demystify the medical system. I’m going to bring you a culturally sound, patient-centric group of people who will come to you and ask you questions. Draw it out of you. Not give you stuff. But draw it out of you.”

Three Pillars

Through his nonprofit, Abridge2Light, Lawrence focuses on three things.

Protection of womanhood. She’s the first mother, the first teacher, the first friend. And he’s seen too much normalizing of violence against women on social media. That has to change.

Intentional mentorship. He works inside Dallas County Juvenile Detention facilities with young men and women, facilitating behavioral transformation. They can stay with the program after release too, along with their parents.

Chronic disease awareness. De-stigmatizing cancer and other chronic diseases. Speaking about them as commonly as a common cold. Because silence is killing people.

The Double-Edged Sword

Here’s what Lawrence keeps coming back to, and it’s important. Discipline saved his life in the military. It got him to Colonel rank in special operations. It gave him the trust and confidence of his peers, his superiors, his subordinates.

The same discipline nearly killed him.

When someone asked if he was all right, the answer was always: “I’m all right. I’m okay. I’m focused on the mission.”

In 2004, he chipped his coccyx bone, his tailbone, on a military free fall jump. High altitude, low opening. HALO jump from about 10,000 feet.

He didn’t get it looked at until 2017.

Thirteen years. Because raising your hand is a sign of weakness.

“Our discipline is a double-edged sword,” he says. “It’s what enables us to ascend, rank after rank, position after position. But that same discipline has almost put me in the grave.”

And it’s not just military men. It’s men in underserved communities who lack access to insurance or education about health screening. It’s anyone who’s been taught that your body’s needs come second to the mission.

What Gets Through

Lawrence talks about being a feeler. He loves hard. Music does something to him. It can take him back to different periods of his life, different episodes, different versions of himself.

He’s a closet DJ. A music connoisseur.

His favorite musician is Prince (purple, like he said). His favorite performer is Michael Jackson. And Human Nature holds a specific place in his heart. He was listening to it as they wheeled him into the operating room for his second surgery at MD Anderson.

The song composition. The voice. The journey it takes you on.

When he talks about his dream, he talks about wanting to visit Bali and Thailand. Places that represent peace, tranquility, happiness, respect. Places that feel different.

And his call to action comes with humor and honesty. “When you hear Human Nature, make a phone call to one of your friends. Ask them when their last colonoscopy was.”

If Everything Were Off the Table

If money, time, and institutional gatekeeping were all off the table, what would Lawrence build?

A facility. One place that provides access, education, and protection for women. That provides patience, mentorship, and understanding for young people. That de-stigmatizes cancer and chronic diseases. That reduces violence and increases quality of life for all of us.

“Our silence is killing us,” he says.

It’s killing service members. It’s putting people in bad places. It’s keeping men from raising their hands when they need help.

Connect With Dr. Lawrence Henry and Abridge2Light

If you want to learn more about the work Lawrence is doing:

• Organization: Abridge2Light

• Website: www.abridge2light.org

• Contact: Email through the website to connect directly

• Social media: Facebook, Instagram, TikTok, YouTube

Lawrence’s call to action is direct. Send an email. Give them a call. Let Abridge2Light help you navigate uncertain periods. You have thoughts. You have ideas. They’ll help you know which way to turn.

Final Thoughts

Discipline is a gift. It’s what gets you to the top of your field. It’s what keeps you focused. It’s what makes you reliable.

It’s also what can kill you.

For Lawrence Henry, the breakthrough came when he stopped trusting only his discipline and started trusting a team he didn’t vet. When he stopped trying to control the mission and let other people take it over.

And then, when he insisted his voice be heard anyway.

That balance is what he’s trying to teach now. Letting others lead while still advocating for yourself.

Because somewhere in East Orange, New Jersey, or Long Branch, or Dallas County, there’s someone with symptoms they’re rationalizing away. Someone with a mission they’ve chosen over their health.

Lawrence Henry’s story says: Raise your hand. Make the phone call. Insist on your own CT scan.

You don’t have to beat this alone. You just have to be willing to let people in.

And yeah, maybe listen to Human Nature while you’re thinking about scheduling that colonoscopy.

If you’re a veteran or service member dealing with health issues but struggling to reach out, remember that asking for help isn’t weakness. It’s the smartest mission decision you can make. Connect with Abridge2Light or reach out to your VA facility. Your silence isn’t protecting anyone. It’s just keeping you from living the life you deserve.

The hardest part of putting this together isn’t finding people worth featuring. It’s cutting the list down. This week I had more than I could fit, which says something good about where this work is heading. Here are three I keep thinking about.

Carolyn Taylor is heading to the World Cancer Congress in Hong Kong, and what she’s bringing is a masterclass in what “meaningful engagement” looks like once you strip the buzzword off it. Peer support evidence out of Rwanda and Ethiopia. Caregiver approaches co-designed across Latin America. Patients and partners built into national cancer planning instead of consulted after the fact. Three different continents, one idea underneath all of it: the people a system is meant to serve should help build it. That’s the whole game, and she’s showing what it looks like in practice.

Jen Fisher kicked off Baptist Health’s Extraordinary Voices series, and she said something I haven’t stopped turning over — that hope is a discipline, not a mood. She talked about holding hope and hard truth at the same time, and about how you keep pouring into other people without running your own tank dry. Ten years ago she was a patient in that same building. Going back to talk about hope as a practice instead of living it minute by minute — I understand exactly what that walk feels like.

Linda Bohannon joined the planning side of the Amgen Advocacy Summit this year, ten months out from a triple-negative breast cancer diagnosis. She described it as her first time stepping into an in-person room as her new self. I think a lot about that — leadership and lived experience showing up in the same person, and the quiet courage it takes to be seen as someone changed. She’s doing both at once, and doing it out loud.

Different corners of this work — global systems, hope as a discipline, leadership through survivorship — but the same thread runs through all three: advocacy done with people, not just for them. Go read what they’re doing. Better yet, tell them it landed.

That’s Vol. 11 — three people I couldn’t stop thinking about this week. If one of them got to you, don’t just nod and scroll. Go follow them. Dig into their work. Pass their story to someone who needs it. That’s how this community grows.

And if you know someone doing advocacy work that deserves the light, in any disease community, any space, any form, nominate them for a future issue. Drop it in the comments or message me. Nothing gets past me.

Got this from a friend and want it in your inbox every week? Subscribe at advocacyatwork.com. Free, honest, and always pointed at the people actually doing the work.

He had four open heart surgeries before his fifth birthday. The last one caused an acquired brain injury. Suddenly a bright, intelligent boy had to relearn how to talk, walk, eat.

His mother, Deb Brooks, spent the next three decades knowing him better than any doctor ever would. She knew which change in his breathing meant something was wrong. She knew his nuances inside out.

Ryan grew up wanting to be a mechanic. He loved Australian rules football. He raised a daughter with Deb’s help, and Deb was a doting grandmother with all the photos and videos to prove it.

He died on February 16, 2025, aged 33.

The care he received in his final weeks was, by any measure, not good enough.

What happened after that is the reason this story exists.

The Partnership Begins

Chris Brooks reconnected with Deb, an old school friend, in late 2022. They’d barely started when Ryan got diagnosed with Hodgkin’s lymphoma on Christmas Eve that year.

Chris made a decision right then: he would carry this load with her.

What followed was more than two years toggling between Cancer House in Adelaide (which Chris still credits as an absolute lifesaver), the Royal Adelaide Hospital, and home. Four air ambulance transfers between Mount Gambier and Adelaide. Road ambulance trips beyond counting.

Deb brought three decades of knowing exactly what Ryan needed. She could read his body like a book. She understood his nuances.

Chris brought something different to the table. Forty years in Australian infrastructure and industrial services. A career built on procurement, tendering, submissions, and getting complex proposals across the line with people who didn’t have to say yes.

Between them, they had what the situation required. The evidence, and the means to make someone act on it.

“If we weren’t asking the questions or pushing the buttons, we’d get nowhere,” Chris says of that period.

They were learning the system from the inside. Where the gaps were. Where escalation paths should have existed but didn’t. Where a family’s written wishes went when nobody was obliged to follow them.

By the time Ryan’s heart specialist, one of Australia’s leading experts, sat them down and said twelve months, Deb and Chris had a working map of the system’s failure points.

They got six.

In Ryan’s final weeks, they couldn’t find local support. They didn’t even know hospice care existed in their region. The end-of-life plan they’d carefully written was completely ignored.

“We treat our pets better,” Chris says.

The Campaign Starts Before the End

Most people stop there. Grief. A complaint. A letter that goes nowhere.

Not Deb and Chris.

Here’s what’s remarkable: the campaign didn’t start after Ryan died. It started while he was still alive.

September 2024. Ryan was still fighting. Deb sat down and wrote a letter to the Health Advisory Council. That was the first major piece of correspondence, and it set the pattern for everything that followed. Not a complaint about what happened. A documented account of where the system had no mechanism for a family to be heard, and what could be done about it.

She wrote to the CEO of the local health network too. They met.

What followed was more than forty pieces of correspondence to state government alone. Ministers. Members of parliament. Department heads. Health network executives. Clinicians. Peak bodies. Each one written to be answered rather than filed. Each one building on the last.

Chris brought four decades of professional habit to it. He’d spent a career learning that complaints don’t move organizations. Evidence moves organizations. Solutions move organizations. A well-constructed submission that makes it easy for a decision maker to say yes—that moves organizations.

So they built one.

Building the Case

The target became clear early. South Australia had no mandated escalation protocol.

Queensland had Ryan’s Rule—a mechanism allowing a patient, family member, or carer to escalate when something’s wrong and they’re not being heard. New South Wales had an equivalent. Western Australia had one.

South Australia didn’t.

Deb and Chris put together the comparative case. They gathered the interstate models. They went to the people who’d implemented them. They met palliative care specialists, clinicians, academics, administrators. They documented every meeting.

They built and maintained a stakeholder register. Chris wrote the submissions. Together they assembled the evidence base into a package that a Chief Medical Officer could read and act on without having to do the work himself.

Deb’s lived experience, three decades of it, was the foundation. Chris’s contribution was turning it into something a health department could actually implement. Neither half would have worked alone.

Alongside the escalation work, they set up the Ryan Bowman Legacy of Care Foundation. Constitution. Governance. Policies. Procedures. Branding. Australian Charities and Not-for-profits Commission registration. Deductible gift recipient endorsement. The lawyer handling the DGR registration said she’d never seen a matter move that quickly.

The Foundation was publicly announced in February 2026.

The Meeting

Blair Boyer took the health portfolio in mid-2026.

On July 30, 2026, Chris went into a meeting with Allison Willis to meet the Minister and Professor Michael Cusack, SA Health’s Chief Medical Officer.

Deb wasn’t there. She was in Queensland looking after her grandsons, Mason and Harry, while their mother Hayley settled into a new role in Operations at the Royal Flying Doctor Service. Which is its own kind of answer to what this family does.

But here’s the thing: Allison Willis wasn’t a bystander to any of this.

She’s spent 35 years in health. She started as a Director of Nursing at CARA’s disability healthcare support service. Nine years at the Nursing and Midwifery Board of Australia. Principal Adviser Policy and Strategy at the Health Consumers Alliance of South Australia. When that organization closed, she established and still convenes the Health Consumer Advocacy Network SA so consumers in the state wouldn’t be left without an independent voice.

Most directly relevant? Between February 2023 and June 2024, SA Health engaged her as a policy consultant to run a consultative review with consumers, Local Health Networks, and SAAS. She updated the state’s strategic frameworks for consumer feedback, complaints, and consumer engagement.

In other words, the person walking into that meeting had already written the ground the escalation protocol would sit on.

Chris went in expecting resistance. He’d prepared for it.

Boyer listened. Then he turned to Cusack and asked for his view.

Cusack had the submission in front of him.

He agreed with it.

On July 1, 2026, SA Health committed to a mandated escalation protocol. The department’s “You’re Worried, We’re Listening” review is now out for public consultation. The Foundation has lodged its response. The initiative carries Ryan’s name: Ryan’s Voice.

Twenty-two months from that first letter in September 2024 to this ministerial commitment.

People who work in this space put the usual timeframe at three to five years.

Allison, decades into this work, said afterwards that the case Chris had brought did what years of system-side reform hadn’t managed on its own.

How They Actually Did It

Chris is direct about the method, and it’s not complicated.

“Instead of continually complaining, we wanted to bring solutions to the table.”

They didn’t walk into that meeting angry. They walked in with three state models, documented outcomes, and a specific recommendation. They made the decision easy.

There’s a second part to it that Chris attributes to their family GP, Dr. Tasnim Khan: “If you don’t ask, you don’t get.”

And a third part, which is Deb’s, learned across 33 years of hospital corridors: “You get more flies with honey.”

In the hospital, when Deb was advocating for Ryan, she’d take the nurse coming on shift to the side and tell them what to watch for. What the nuances were. What would make Ryan easier to care for. Not confrontation. Useful information that only a long-term carer had.

That’s the posture they carried into every meeting, every email, every submission. Most people in the health system want to do right by their patients. They’re stretched, under-supported, and frequently missing information. The Foundation’s position is simple: you lift the 95% who want to do better rather than pursue the 5% who fail.

The Team Behind It

No campaign runs on two people. Chris and Deb built the coalition deliberately.

Allison Willis - Director of Health Consumer CoLab, convenor of the Health Consumer Advocacy Network SA, 35 years across nursing, professional regulation, and health consumer policy

Camilla Rowland - Former CEO, Palliative Care Australia

Shyla Mills - Palliative Care SA

Professor Gerry O’Callaghan - Adelaide medical education

Dr. Gerald Hickson - Vanderbilt University, who’s implemented comparable protocols

Kirsty Whitehead - Governance director across multiple nonprofits

Peter Taylor - Sydney lawyer, acting pro bono

Shane Haggas and Rebecca Cutting - Ambulance officers advancing regional palliative care

The DAISY Foundation - The international nurse recognition programme, now partnered with the Foundation

What’s Running Now

Ryan’s Voice - Ensuring the escalation protocol is implemented properly and that patients and carers actually know the right exists. A commitment is not an outcome.

The Ryan Bowman Palliative Care Scholarship - Funding end-of-life care training for nurses, ambulance officers, orderlies, and doctors, with the aim of building mentors in each regional area. The inaugural scholarship was awarded on May 5, 2026, in partnership with the Limestone Coast Local Health Network. HITsa Charitable Fund came on as inaugural corporate sponsor.

DAISY Award Programme - Bringing the international nurse recognition programme into South Australian health networks. Deb is Australia’s only mainland DAISY Ambassador.

Ambulance Wish - Extending a metropolitan palliative care programme into regional South Australia.

The driver behind all of it is workforce. Australia has roughly 0.3 palliative care specialists per 100,000 people. Most end-of-life care in this country is delivered by general nurses and doctors who receive very little training in it.

Chris and Professor O’Callaghan, who trains the next generation of healthcare workers, talk about this. The professor said, “Sometimes we come to work and don’t present the best version of ourselves. But we focus on the 95% who do a great job.”

That’s their approach too. They’re not trying to punish the 5% who fail. They’re trying to upskill the 95% who want to do better.

What Matters Most

Ask Chris what he wants people to know about Ryan, and he doesn’t talk about the medical history.

He talks about football. Ryan could pick a multi better than anyone Chris has ever met. Over twelve months, Chris reckons, he missed one.

It’s the kind of detail that makes someone real rather than a case number. Which is the whole point. The system deals in patients. Families deal in people.

Deb’s Book

Deb has written a book. Thirty-three years of caregiving, advocacy, and grief, written by the person who lived it.

It’s the sort of account that doesn’t exist anywhere else. Not a clinical text. Not a memoir of loss. But a working record of what it takes to keep a child with complex needs alive and heard inside a system that’s not built for either.

It needs a publisher.

If anyone reading this works in publishing, that’s the ask.

Connect With Deb, Chris, and the Foundation

If you want to learn more about the foundation or support their work:

• Facebook: Ryan Bowman Legacy of Care Foundation

• Instagram: Ryan Bowman Legacy of Care Foundation

• LinkedIn: Ryan Bowman Legacy of Care Foundation

• Website: ryanbowmanlegacy.org.au

Final Thoughts

Deb spent 33 years fighting for Ryan. She learned through decades of medical battles how to advocate effectively. How to push without being pushed back at. How to make healthcare workers want to do better for her son.

When Ryan’s end-of-life care shattered her, she didn’t wait for time to pass. She didn’t accept grief as the end of the story.

She started the fight in September 2024, while Ryan was still alive. She documented the failures. She refused to accept that this was just how things were.

She and Chris, her partner who brought 40 years of professional expertise to turn lived experience into policy, changed a healthcare commitment in South Australia in 22 months. They moved something that experts said would take three to five years.

That book Deb wrote, the 33-year chronicle of caregiving? It’s seeking a publisher. Flinders University is already using it to teach.

If you’re thinking about advocacy but wondering if you’re qualified, or if you have enough time or connections, Deb’s story says otherwise.

You just need to identify the problem from lived experience. Bring solutions, not complaints. Find your people. Do not stop pushing.

And start before you think you’re ready. Before the crisis reaches its peak. Before it’s too late.

That’s what Deb did for Ryan.

That’s what Deb and Chris continue to do every day.

If you’re dealing with end-of-life care for a loved one, or if you’ve experienced poor palliative care, reach out to the Ryan Bowman Legacy of Care Foundation. If you’re a caregiver who’s had to advocate fiercely for your loved one, know that your voice matters. There are people building systems to make sure it’s heard. Deb and Chris are proof of that.

Every week I sit down to write this newsletter and I think about the moment I stopped being a patient and started being an advocate. It wasn’t dramatic. It was just a decision, a quiet one, that the experience I’d been through meant something, and that meaning was only real if I did something with it. The three people I’m spotlighting this week made that same decision, and then they got to work. This is Vol. 10. Let’s go.

Nellie Gbadebo — Meeting People Where They Actually Are

Nellie Gbadebo built something I genuinely wish existed in more spaces: The Girls’ Bathroom (TGB). The name alone tells you everything about her instinct, she didn’t try to pull people into a clinical setting and talk at them about their health. She found the place where women already gather, already trust each other, already talk freely, and she made that the entry point.

TGB is grounded in an action-over-awareness thesis, which means Nellie isn’t interested in putting a ribbon on something and calling it a win. She wants behavior change. And the numbers back her up. Over 500 people registered for TGB, and the outcomes are striking: more than 97% reported feeling more confident engaging with healthcare services after speaking with clinicians at the event. More than 97% committed to checking their chest monthly. More than 97% said they now feel more confident recognizing the signs and symptoms of breast cancer.

That’s not a campaign. That’s a transformation — at scale, rooted in culture, built by someone who understands that trust is the real infrastructure of healthcare access.

Follow Nellie on LinkedIn: https://www.linkedin.com/in/nellie-gbadebo/

Valarie Traynham — Earning a Seat at the Research Table

Valarie Traynham showed up to an AACR/ASCO research workshop and did what the best advocates do: she learned, she listened, and then she shared what she took away so the rest of us could benefit too.

Her takeaways zeroed in on two things that matter enormously in clinical research, endpoint selection and participant burden. These aren’t soft, feel-good topics. These are the structural decisions that determine whether a study actually answers the questions patients need answered, and whether the people enrolled in that study are treated like partners or like data points.

Valarie is a survivor. She brings lived expertise into rooms that have historically been designed without her. But what strikes me most isn’t just that she’s in those rooms, it’s that she’s doing the homework to understand the science deeply enough to push back on it meaningfully. That combination of personal experience and intellectual rigor is exactly what the research world needs more of, and exactly what patient advocacy at its best looks like.

Follow Valarie on LinkedIn: https://www.linkedin.com/in/valarietraynham/

Linda Hurtado — Using the Platform You Have

Fifteen years. That’s how long Linda Hurtado has lived on the other side of a breast cancer diagnosis. And all that time, she’s been using the platform she has, a Fox 13 anchor desk, to do something simple and powerful: tell people to get screened.

Linda was recently recognized as a Tampa Bay champion of early detection, spotlighted by ACS Florida VP Wendy Johnson. The recognition is well-deserved, but I want to say something about what Linda actually represents. Not every advocate goes to conferences or writes policy briefs or runs nonprofits. Some advocates just refuse to let their story be private. They show up every day to a job that puts them in front of people, and they use that visibility in service of something bigger than the broadcast.

Early detection saves lives. Linda knows that personally. And she keeps saying it, over and over, to anyone who will listen. That consistency, that refusal to move on, is its own kind of courage.

Follow Linda on LinkedIn: https://www.linkedin.com/in/linda-hurtado-80422949/

Those are your three for Vol. 10. If one of them moved you, go follow them. Engage with their work. Share their stories. That’s how this community grows.

And if you know someone doing advocacy work that deserves a spotlight, in any disease community, any space, any form, nominate them for a future issue. Drop it in the comments or message me. I read everything.

If someone forwarded this to you and you want it in your inbox every week, subscribe at advocacyatwork.com. It’s free, it’s real, and it’s always going to be about the people doing the work.

Lindsay had terrible period cramps. For years, actually—as long as she can remember. Heavy bleeding, bloating that made her feel like her body wasn’t her own, cramps that would sideline her for days.

She kept thinking: there’s something wrong here. And she’d go to her doctors, over and over, convinced she had endometriosis. She’d done the research. She had her case ready.

Every single time? Same answer: “You’re a woman. Women have periods. Some worse than others. Try birth control. Take some Advil.”

That was it. Bandaid solution. No curiosity. No digging deeper.

Until one doctor suggested an IUD, which meant an ultrasound, which meant—finally—someone actually looking inside her body to see what was going on.

The Cyst That Wasn’t Just a Cyst

When the ultrasound came back showing a complex ovarian cyst, Lindsay wasn’t worried. Like, at all.

“I thought all women get cysts,” she told me. “This is normal stuff. I’ll go in, they’ll remove it, I’ll be home the same day. No big deal.”

The Friday before she ran her fourth marathon, she had her MRI. That Sunday, she finished 26.2 miles. A week later, doctors are telling her there's this huge, weird cyst in her abdomen that needs to come out.

Her primary care doctor said she should see an oncologist. Lindsay was like... wait, what? An oncologist? For a cyst?

That felt like overkill. So she found a different gynecologist, one who specialized in removing ovarian cysts. He seemed confident. Said it’d be straightforward. Easy procedure.

But then Lindsay did something that saved her life: she decided to at least see the oncologist her original doctor had recommended. Just to have covered her bases. Just to say she’d gotten a second opinion before going with the first guy.

That appointment changed everything.

The Layers of Misdiagnosis: Why “Rare” Doesn’t Mean “One in a Million”

Here’s what Lindsay has learned in four years of advocacy: appendix cancer isn’t as rare as the statistics suggest.

The numbers are skewed, she believes, because of systematic misdiagnosis and missed diagnosis.

When Lindsay joined PMP PALS (Pseudomyxoma Peritonei and Appendix Cancer Support), a volunteer-run global organization supporting appendix cancer patients and caregivers, she started hearing the same story over and over again:

A woman has an ovarian cyst removed years ago. The pathology on that specimen isn’t thorough enough. The appendix cancer cells hiding in that cyst go unnoticed. Years later, her abdomen fills with mucin (the jelly-like substance from appendix cancer cells), and she’s finally diagnosed, but by then, it’s advanced.

A man has a routine hernia repair. The surgeon notices mucin in his abdominal cavity but doesn't do anything about it. Years later: appendix cancer diagnosis.

Another patient: An appendix was removed years ago for what was thought to be appendicitis. The doctor didn’t run the proper pathology. Years later: appendix cancer diagnosis.

“After hearing these stories over and over, I realized we need to spread awareness about this disease because the more people that know about it, they’ll get diagnosed earlier and that will translate into saving lives,” Lindsay says.

It’s not that appendix cancer is rare. It’s that it’s overlooked.

The Doctor With a Hunch: Why Clinical Intuition Matters

Lindsay credits one physician with saving her life: Dr. Villella at Northwell Lenox Hill Hospital in NYC.

Not because Dr. Villella knew everything about appendix cancer. But because she had a hunch. She suspected something. And she was willing to investigate.

“After the surgery, she told my parents, ‘I have a hunch what it is. Wait until everything comes back,’” Lindsay recalls.

But she hears from countless patients in PMP PALS support group calls who had different experiences:

“I’ve had this removed, close me back up.”

No hunch. No investigation. No second layer of curiosity.

That’s why the awareness matters. That’s why education matters. Not just for patients, but for providers.

“It’s spreading awareness not only to patients, but to providers also that need to learn what appendix cancer is,” Lindsay emphasizes. “And then there’s another layer to it, the treatment of it, because the treatment for certain types of appendix cancer is not common and not all hospitals even offer that treatment.”

Two Definitions of Advocacy: Self-Advocacy and Awareness

When Lindsay defines advocacy, she offers two meanings, both born from her own experience.

The first: Self-advocacy.

“Advocacy meaning self-advocacy and trusting your body, listening to your body and being confident and feeling empowered to push back on doctors and really fight for answers,” she says. “If I had listened to doctors who were just downplaying all of my symptoms, I would’ve either been misdiagnosed or diagnosed too late for any kind of treatment.”

Lindsay had to become an expert in her own body. She had to trust her instinct that something was wrong when doctors dismissed her symptoms as normal. She had to push for the ultrasound. She had to get the second opinion.

The second: Spreading awareness.

“Advocacy to me is telling as many people as I can that appendix cancer is a thing, that it exists, that these are the symptoms to look for. I strongly, very strongly believe that appendix cancer is not as rare as the numbers show.”

This is where awareness months become crucial.

Why Awareness Months Matter for Rare Diseases

August is Appendix Cancer Awareness Month. If you haven’t heard of it, that’s kind of the point.

It’s a time when organizations like the Appendix Cancer Research Foundation and PMP PALS try to make noise about something almost nobody knows exists. Every social post, every 5K, every article—it’s an attempt to break through the silence.

Why does it matter? Because awareness literally saves lives.

A person sees Lindsay’s story and recognizes their own symptoms. A doctor reads something about appendix cancer and suddenly that weird patient presentation clicks into focus. A family member connects the dots between a diagnosis that happened years ago and new symptoms appearing now.

One month dedicated to talking about something rare? That’s how people find out they’re not alone. That’s how misdiagnosis gets caught. That’s how someone whose doctor would’ve just closed them back up after surgery instead gets the pathology work that changes everything.

Lindsay recently hosted the first Manhattan location of the ACPMP 5K. She expected a small gathering of friends and family.

Over 60 people showed up. They came from as far as Arizona and Texas.

And they raised over $15,000, contributing to an overall total of over $200,000.

What Lindsay Is Actually Doing About It

Lindsay has fallen into all the main buckets of patient advocacy (and honestly, some people spend years figuring out where they fit—she just kind of... does it all).

Awareness: She’s everywhere. Instagram (@WhenLifeGivesYouLamn), speaking at events, hosting the first NYC 5K for appendix cancer research, telling anyone who will listen that this disease exists.

Fundraising: The 5K raised over $15,000 this year. The whole thing started because she figured it’d be a small gathering of friends and family. Over 60 people showed up.

Research advocacy: This is where she’s really passionate. There’s a trial called BROMAC—an enzyme derived from pineapples that, when applied directly to the mucin in the abdominal cavity, has shown real promise in Australia. But getting it approved in the U.S.? Still stuck. “They’re ready to go,” Lindsay told me with frustration. “They’re actually ready to go.”

She wants to help push these trials through. Wants to figure out how to accelerate getting new treatments available to patients who literally have no other options.

Building community: She just joined the board of PMP PALS. Planning the October in-person meetup. Speaking at the Mike Weber Senior Memorial Foundation fundraiser (named after someone who died of appendix cancer ten years ago).

All of this matters because it’s interconnected. Awareness drives fundraising. Fundraising funds research. Research eventually influences policy. You can’t separate one from the others.

The Long Game: Surveillance and Service

Lindsay is now four years out from her diagnosis with no evidence of disease (NED).

But NED doesn’t mean cured. It doesn’t mean safe. It means: no cancer visible right now.

For appendix cancer patients, surveillance is lifelong. The possibility of recurrence is always present.

“I have to be on surveillance. I’m on watch and wait for the rest of my life. There is a chance it will come back,” Lindsay says candidly. “And so knowing all of that, I’m just trying to flip it and instead of being worried about it, just continue to try and make a difference.”

She recently joined the board of PMP PALS. She’s planning their annual in-person October meetup. She’s speaking at the Mike Weber Senior Memorial Foundation fundraiser—named for a patient who died of appendix cancer ten years ago.

She’s also planning next year’s 5K, hoping to build on this year’s success.

This is the long game. Not the sprint of active treatment, but the marathon of living as a survivor, carrying the weight of knowing too much, and choosing to use that knowledge to help others.

The Magic Wand: Everyone Knows Appendix Cancer

If resources were unlimited, if she had all the power in the world, what would Lindsay do?

Not find a cure. She recognizes that’s too simplistic for a disease as complex as appendix cancer.

Instead: “If I had all the resources, it would be to teach everyone about what this is. I don’t know if that means paying people to go door to door to everyone, but if you mentioned something like breast cancer, everyone knows what breast cancer is. So how could we take some funding to teach everyone what appendix cancer is?”

That’s the real victory. Not a cure, but awareness. Early detection. Doctors with hunches. Patients who trust their bodies enough to push back.

A world where appendix cancer isn’t hidden in the shadows of misdiagnosis, but visible, understood, and caught early.

August Is Appendix Cancer Awareness Month: Here’s What You Can Do

If you’re reading this in August, or any time of year, here’s why awareness months for rare diseases matter and how you can participate:

Learn about appendix cancer:

• Low-grade mucinous neoplasms (LAMN) present with bloating, abdominal pain, frequent urination

• Be aware of vague gynecological symptoms that don’t respond to standard treatment

• Understand that appendix cancer often masquerades as ovarian disease

Donate to research:

• Appendix Cancer Research Foundation (ACRF)

• PMP PALS (the oldest organization supporting appendix cancer patients)

Spread awareness:

• Share Lindsay’s story

• Follow @WhenLifeGivesYouLamn on Instagram

• Sign up for the upcoming PMP Pals One in a Million Virtual 5K

• Attend local 5K events if available

• Talk to your doctor about appendix cancer

Trust your body:

• If something feels wrong, keep pushing until you get answers

• Get second opinions

• Ask about pathology results when specimens are removed

Connect With Lindsay

If you want to reach out to Lindsay or learn more:

• Instagram: @WhenLifeGivesYouLamn (LAMN because that was her pathology)

• Email: lindsay@pmppals.net

• PMP PALS Website: Find support groups, resources, and community

• LinkedIn & Facebook: Connect with Lindsay directly

Final Thoughts

Lindsay’s story is a perfect storm of luck and advocacy. She got lucky that an oncologist had a hunch. Lucky that she pushed for that second opinion. Lucky that she had access to multiple doctors and the privilege of being able to see them.

But she also did something harder: she listened to her body when her doctors told her to stop complaining. She pushed back. She got multiple opinions. And then, when she got the diagnosis, she refused to let it be the end of her story.

Four years later, she’s on the board of the oldest appendix cancer support organization. She’s speaking at fundraisers. She’s hosting 5Ks. She’s sitting in support group calls listening to people discover their diagnosis and thinking: I can help you. You’re not alone in this.

That’s what advocacy looks like for diseases people don’t know exist.

It’s not always political. It’s not always visible. But it saves lives.

Because somewhere, someone will hear about appendix cancer for the first time and recognize their own symptoms. Or their mom’s. Or their friend’s.

And that person won’t have to feel as alone as Lindsay did.

August is Appendix Cancer Awareness Month. If you know someone with unexplained abdominal symptoms, GI issues, or a history of ovarian cysts, encourage them to learn about appendix cancer. If you’re experiencing symptoms, advocate for yourself. Get the second opinion. Trust your body. You might be saving your own life.

Every week I sit down to write this and I think, there are so many people quietly doing the work. Not waiting for permission, not waiting until they have a platform or a title or the perfect moment. Just showing up, over and over, because they know what it costs when no one does. This week’s three are exactly that kind of people. I’m glad they exist. I’m glad you get to know them.

Caroline Maschke

Caroline’s entry into advocacy didn’t come from a conference or a fellowship program. It came from watching her dad go through a rectal cancer diagnosis and deciding she wanted to do something about the loneliness other kids feel in those moments. That’s where it starts for a lot of us, not with a strategy, but with a feeling you can’t shake.

What I love most about Caroline’s approach is how grounded it is. She doesn’t romanticize access or assume everyone can hop on a plane to D.C. She talks about handwritten letters to district offices. A steady, respectful email to a legislative aide. A real conversation in your own community. And she’s right, those things add up in ways that are easy to underestimate.

She said something I’ve been thinking about since I first read it: you don’t need a megaphone to be an effective leader or advocate, just passion. That’s it. That’s the whole framework. Caroline is proof that the most powerful advocates aren’t always the loudest ones, they’re the most consistent ones. She started from a place of wanting to bring hope to others, and she’s doing exactly that.

Kelly Mellott

Eight years is a long time. It’s also not very long at all, depending on the day. Kelly Mellott looked back at a photo recently, one of those images that pulls you right back into the middle of the hardest stretch, and she let herself remember. The fear. The tears. The uncertainty about what life would look like on the other side of it.

What gets me about Kelly’s reflection is the part that comes after the remembering. She didn’t just survive; she absorbed it. She let the experience reshape how she sees her work, how she sees patients, how she thinks about what healthcare is actually for. And that perspective, the one you earn when you’re the person in the gown, doesn’t expire at discharge. It travels with you.

Kelly spends her days working to create more ordinary moments for patients, the kind of moments that feel small from the outside but are everything when you’re in the thick of a diagnosis. Behind every test result is a person hoping for more time, more life, more normal. She hasn’t forgotten that, you can tell. And she’s built her work around that memory.

Shuchi Rana

Shuchi Rana and Ritesh Patel just launched something I think is going to matter. It’s a show built on a premise that sounds simple but is actually kind of radical in this industry: patients and caregivers aren’t end users. They’re experts. Full stop.

That framing changes everything — who you invite to the table, what questions you ask, what you consider a success. And the fact that their first guest is Grace Cordovano tells you they’re not just saying the right things. They’re putting their guest list where their values are.A few lines from Shuchi’s post have stuck with me.

Behind every data point is a person.
Innovation means little if it doesn’t improve someone’s life.
Sometimes the most transformative thing you can do is simply listen.

Those aren’t platitudes when they’re orienting your entire platform, they’re a mission statement. I’ll be following this show closely, and I have a feeling a lot of you will too. This is the kind of thing our space needs more of.

Honestly, narrowing it down was the hard part this week. There were far more worthy stories than I had room for. Pamela Deasy wrote beautifully about the sea as part of her recovery, a reminder that survivorship isn’t only what happens inside hospital walls, but the places and communities we return to. Kasey Pacheco spotlighted Claudia Cometa on the gap between what the system thinks it’s providing and what patients actually experience. Allison Rosen is heading to COSMO 2026 to talk about trusted voices and real patient–clinician partnership. And the Patient Advocate Foundation shared the origin story behind Nancy Davenport-Ennis being challenged to “pass a little bill,” proof of what happens when the patient’s perspective finally gets a seat at the table. When a single week holds this many voices doing this kind of work, it’s a good sign for all of us.

If someone in your orbit is doing the quiet, steady, meaningful work of patient advocacy — please send them my way. Reply below or submit them to be included next week. And if you’re not subscribed yet, this is your nudge. New voices, every week. Let’s keep celebrating the people who show up.

I knew she was a chef. I knew she had a TBI, a traumatic brain injury, which, as Vincent put it, is the silent injury. The kind of thing that changes how you think and feel and move through the world, and most people around you have no idea.

What I didn’t know was how much her story was going to make me rethink the word advocacy all over again.

A chef, not a doctor — and that’s the whole point

Adrienne is quick to clarify what she is and what she isn’t. She’s not a dietician. Not a nutritionist. Not a medical practitioner. She’s a chef, a holistic one, who started connecting the dots between food and health back in 1998, and has never really stopped pulling that thread since.

Her path into cooking started early. She was around eight years old when her parents opened an Italian deli in Florida, and she was the only one in the family allowed to touch the charcuterie boards. The meat and cheese, that was Adrienne’s domain. Nobody else was permitted near them. At 14, she was working in hospitality. At 16, she passed out on the top riser of her high school choir class and discovered she was hypoglycemic.

That last one changed everything.

Her doctor gave her a choice: start eating five to six small meals a day, high protein and complex carbohydrates — or become insulin dependent as her pancreas burned out. Her words: “I don’t know what my pancreas is, but I know I don’t want it to burn out.”

She changed how she ate. Her energy leveled out. Her moods stabilized. She felt, for the first time, like herself. And the connection that would define the rest of her career was made right there in a doctor’s office at sixteen years old.

What she’s seen food actually do

Adrienne eventually moved into natural foods, working her way up through health food store cafes, supplementing that with her earlier pharmacy studies, and watching something remarkable happen over and over again: people eating differently and getting measurably better.

Blood pressure dropping. Cholesterol improving. Blood sugar stabilizing. Five stubborn pounds disappearing. Not because of a drug or a protocol, because of what was on the plate.

She was careful when I asked her to go deep on the gut-cancer-diet connection — appropriately so, because bodies are individual and nothing is cookie cutter — but she offered a framework that I think a lot of us in the chronic illness space have at least heard whispers of: protein and fiber from vegetables, not starchy carbs. Less sugar. Less acid. Fewer mucus-producing foods. And a gut microbiome that has a fighting chance.

She’s also a big believer in sauerkraut juice — homemade, specifically — as one of the most potent natural probiotics you can make. Her take: it’s like a concierge probiotic, built from the beneficial bacteria in your own environment. And apparently it helps you sleep.

As a liver transplant recipient and colorectal cancer survivor, married to a fellow pescatarian, someone who has sat with a nutritionist at Moffitt and learned firsthand what the liver processes and demands, I was hanging on every word.

The advocacy you don’t see on Capitol Hill

Here’s what struck me most about Adrienne’s work.

She’s not showing up at congressional hearings. She’s not on panels. You won’t find her in a lot of the places we typically associate with advocacy. But she’s going into corporations, doing lunch and learns and health fairs and speaking engagements, and reaching hundreds of employees at a time through a single conversation.

She’s also developed a cooking show called Healthy Meals in Minutes, built around one premise: a complete meal, protein and two vegetables, in under 30 minutes. No starchy carbs. No perfection required. She’s compared herself to the Julia Child of the 2020s, and when she tells you she’s almost set her pan on fire on camera because her oil got too hot and kept rolling anyway, you believe her.

That’s the point. She’s not trying to make you feel like cooking is something other people do. She’s trying to make it something you actually do, tonight, with what you have.

I told her on the episode: a corporation can spend almost as much on employee healthcare as on salaries. If your employees are healthier, the claims drop, the costs drop, and everyone wins. The advocacy doesn’t have to happen on a grand stage to have a large impact. Sometimes it happens in a conference room over lunch.

Advocacy as a voice for people who don’t know they need one

When I asked Adrienne how she defines advocacy, she didn’t hesitate.

“Having a voice for the voiceless. And maybe people don’t even know that they need something talked about — until they realize, wow, okay, this isn’t normal and I can get help for this.”

That’s it, isn’t it? So much of what we do as advocates is simply being present in a way that makes someone feel less alone in what they’re experiencing. For Adrienne, that might be the person who didn’t know their fatigue and moodiness were connected to what they were eating. For Vincent, the friend who connected us, it’s showing TBI survivors that the way their brain works now isn’t broken, it’s just different. For me, it’s being the guy who made it to the other side of a 13% survival rate and showing up so the next person knows it’s possible.

The form changes. The function doesn’t.

One big wish

If resources were no object, Adrienne’s answer was simple: she wants everybody to want to take care of their health. To understand that movement, mindset, and food are all connected — and that we have more control over those three things than we think.

Not because illness can always be prevented. But because, as she put it: “What’s the sense of having longevity if it’s going to be spent sick?”

That line stopped me cold.

I’ve been thinking about it ever since.

You can find Adrienne and her work at thefoodwhisperer.info and follow along as her rebrand takes shape. Her cooking show and a wildly fun wine series (yes, really) live on YouTube at The FoodWhisperer813. Find her on Instagram and TikTok at @IAmTheFoodWhisperer, and connect with her professionally on LinkedIn.

If this conversation resonated with you, share it with someone who needs to hear it. And if you have thoughts, on food, on advocacy, on what it means to take responsibility for your own health, I’d love to hear from you in the comments.

Until next time.

— Tim

Every week I sit down to write this and think: these people didn’t have to do any of this. Nobody asked them to turn their hardest experiences into fuel for someone else’s fight. They just did. That’s what advocacy looks like when it’s real — not a title, not a program, just people deciding that what happened to them is going to mean something. This week’s three advocates are doing exactly that, and I want to make sure you know their names.

Wenora Johnson LinkedIn

Wenora just published a piece with Cancer-Community.com that I think a lot of survivors are going to feel in their chest. She’s writing about the financial aftermath of a cancer diagnosis — not the treatment costs, but what comes after. The bills that keep arriving after you’re supposed to be celebrating survival. The lost income. The credit that took a hit while you were just trying to get through the week.

Wenora’s argument is one I believe deeply: financial toxicity isn’t a side effect of treatment. It’s a survivorship issue. Full stop. And until we treat it that way — until oncology teams, payers, and advocacy organizations actually build financial recovery into the survivorship conversation — we’re telling people they’re healed when they’re still drowning.

What makes this piece land is that Wenora isn’t theorizing. She’s drawing on her own experience, and you can feel that in every paragraph. She’s not pointing at a problem from a distance. She lived it, and now she’s naming it clearly enough that nobody can pretend they didn’t see it. That’s the kind of advocacy that actually moves things.

Go read her piece. Then share it with someone who thinks survivorship is just a scan result.

Sharon Rivera Sanchez LinkedIn

Sharon was the featured speaker at the Global Colon Cancer Association’s July member meeting, and her topic was one that the research world keeps treating as optional: why every community deserves a seat at the research table.

Here’s what makes Sharon’s voice different. She’s not making this argument from the outside looking in. She’s a five-time clinical trial participant. She has sat in those rooms, completed those protocols, and watched what happens when the people running the study don’t look like the people who need the treatment most. She knows firsthand what underrepresentation actually costs — not in a report, but in outcomes.

Her message to the GCCA is one I wish more researchers and trial sponsors would sit with: representation isn’t a box to check in your IRB application. It’s a question of whether tomorrow’s treatments are going to work for everyone, or just for the people who already had easiest access to yesterday’s. Those are two very different outcomes, and we only get to choose one.

The full session is available to watch, and I’d encourage you to. Sharon is a clear, compelling speaker, and this is a conversation the field needs to keep having until the data actually changes.

Ebonie Michelle, MPH LinkedIn

Disclosure: Ebonie and I are in the same 2026 Cancer Nation Leadership Academy cohort — so yes, I’m a little biased. But I’d be writing about her either way.

Ebonie was selected for the 2026 Cancer Nation Leadership Academy cohort, and the way she announced it tells you everything you need to know about how she works. She didn’t just share the news. She used the moment to lay out her purpose: she focuses on sexual health and wellness in cancer care — an area the field consistently underaddresses, underresources, and frankly, often refuses to talk about at all.

Here’s the thing Ebonie understands that too many care teams don’t: intimacy, identity, and self-image don’t go on pause when treatment begins. Patients are still whole people. Partners and caregivers are navigating enormous changes with almost no language and almost no support. And survivors come out the other side of treatment sometimes feeling like strangers in their own bodies, with nobody to help them find their way back.

Ebonie is building the infrastructure for those conversations. That’s essential work, and I’m genuinely proud to be in community with her.

Those are your three for Vol. 8. If someone in your world is doing work like this — advocating, writing, speaking, building, showing up — nominate them. Hit reply or find the nomination link at advocacyatwork.com. And if someone forwarded this to you, I’d love for you to subscribe so you don’t miss next week’s.

Carole Motycka was living the dream.

She was a suburban mom with four kids, watching them grow into cool, independent humans. She was transitioning from the exhausting role of hands-on parenting into what she calls the “sidecar”—letting them drive while she got to do more of her own things. She was an active runner in the best shape of her life. She and her family were hiking.

Then she fell on a trail and thought she had a sore shoulder.

She went to the emergency room. And from a simple diagnosis of shoulder pain came a cascade of medical terminology that would reshape her entire existence: metastatic colorectal cancer, stage 4, prognosis of six months to live.

“My world that was seemingly normal gosh turned upside down in a hot second,” Caroline says. “And it really spiraled into honestly panic in some senses, grief, pain. There were so many sad things that I experienced right away.”

But what hit her hardest wasn’t just the diagnosis. It was the realization that she didn’t speak the language of oncology. She didn’t understand the words doctors were using. She had no framework for what was happening.

“I was crippled with how do I figure out what my steps are because I don’t know any of this,” she recalls.

That helplessness—that moment of standing at the bottom of a mountain you didn’t know you had to climb—became the catalyst for everything that followed.

The Language of Cancer: When Education Becomes Survival

Carole’s early response to her diagnosis was methodical and deeply Type A: she decided to learn.

She bought little pocket guides on how to advocate for herself. She googled obsessively. She did homework. She asked her oncologist endless questions. She tried to be 10 steps ahead of the disease, to control what was happening.

“I’m a type A person, so I wanted to be 10 steps ahead. And I quickly realized that that wasn’t the case, that it was a day-by-day process,” she admits.

But there was a problem with her solo approach: her brain was starving for something that facts and figures couldn’t provide. She needed to know that other people were surviving this. She needed to hear stories of hope. She needed witnesses to the possibility that life could continue after cancer.

That’s when she found Colon Talks, a community space within the Colon Club. She dove into the chats. She read other people’s stories. She learned that what she was experiencing was real, shared, and survivable.

“I learned so much from community,” she says. “And I think that really uplifted me and empowered me.”

That education took years. It wasn’t a two-week process. It was slow, sustained engagement with people who understood at a cellular level what she was going through.

“I needed both of those things,” she explains. “The medical side that I was digging into so much, trying to get myself so far ahead and have plans. And I really needed that balance of the community to help me understand that it could also pivot and things were okay.”

The Six-Month Sentence and the Pivot Nobody Expected

Twelve rounds of chemotherapy. A clinical trial with fifteen patients testing a new treatment called FUDR administered through a HAI pump inserted directly into her liver.

And then: acute liver failure.

The treatment that was supposed to save her life nearly killed her instead. She overdosed her liver. She developed an aneurysm in the Cleveland Clinic parking lot. There’s a gap in her memory from this period, she calls it “very gray”, because the trauma of it blurred the edges of what should have been distinct moments.

But she remembers two specific things.

The first is the image of her surgeon sitting on her hospital bed. He was a man who had always had “something in his back pocket” as an attempt to save her. A plan. A solution. A next step.

“And he said, ‘I’m out of things in my pocket,’” Caroline recalls. “He said, ‘I can’t give you chemo for your liver. I can’t save you at this point.’”

That admission, the moment when the thing supposed to save you admits defeat, would break most people. Caroline felt the weight of it.

But her surgeon wasn’t finished. He had one more thing. One last card he hadn’t played yet.

“He said, ‘I have an opportunity,’” Caroline remembers. He went through a process she didn’t understand. Translational research. Something from Norway. Details that meant nothing to her because she was drowning in the moment.

But he said she had a chance at life.

“I have four boys and I said immediately, I’m in,” she says. “It didn’t matter to me what it meant, what the details were. I knew that I wasn’t going to let my kids think I ever gave up on them.”

That day on the hospital bed was the day everything changed. She had no idea what was going to happen. She was agreeing to something she didn’t understand, with outcomes she couldn’t predict.

But she was all in.

One of the First: Finding a Liver Through Faith and Congregation

Carole was one of the first people in North America to receive a liver transplant after being diagnosed with metastatic colorectal cancer.

There was no list to consult. There were no guidelines. There was essentially one option: find a donor yourself.

“Here I am dying and now I have to find a liver too. I mean, this is a lot of work for me,” she says, with the dark humor of someone who’s survived the unsurvivable.

But her Type A personality that had worked against her in the early days of trying to “out-research” cancer became an asset in a completely different way. She had to take action. She had to find someone willing to give her part of their liver.

She worked at her church in Ohio as the youth director. She had raised her children there. She was part of that community’s fabric.

Her pastor offered a radical solution: put a note in the church bulletin asking if anyone would donate a liver to Caroline.

“I said to him, ‘I don’t think that’s the thing that you do with the bulletin,’” Caroline laughs. “And he said, ‘No, it’s fine.’”

It was fine. It was more than fine. It worked.

Her community rallied. The bulletin went out. And Caroline’s donor—Jason—saw the note and knew immediately that he was the person. He knew it the moment he read those words.

The medical team evaluated him as one of fifty potential donors. He was the sixth person they looked at closely. He was frustrated by the process because he already knew.

“He was right. He was the perfect match,” Caroline says.

She found her liver through faith. Through a congregation that showed up. Through a stranger who became family through an act of unselfishness.

Jason saved her life.

The Hardest Part: Surrendering Control in the Process

Being Type A through a liver transplant evaluation process is its own unique torture.

You want to know things. You want to understand the details. You want to be in control of which donor gets selected, when the surgery happens, what the timeline is.

But HIPAA restrictions mean you know almost nothing. Other people make the decisions. You have to trust their judgment. You have to surrender.

“On top of all the trauma that my family were going through, we had to really just lean into trust and lean into hope and lean into just knowing that this was going to be okay no matter what happened,” Carole says. “And I say that without... I say that really, I guess sort of flippantly. I don’t want people to think that wasn’t a hard job because that is extremely hard work.”

Especially when you’re someone who was trained to be 10 steps ahead.

“I had to advocate for myself in that space and say, ‘Okay, Caroline can do this much. I can control these things and everything else I’m going to have to allow other people to trust and count on their knowledge,’” she explains. “And that’s extremely hard and it takes a lot of work.”

After Transplant: The Unexpected Gift of Advocacy

Carole spent a year in acute care after her transplant.

When she came out of it, she faced a disorienting reality: life was going to be different forever. She couldn’t change that fact. But she was desperate to do something meaningful with it.

She started volunteering with Colon Club, showing up at Call on Congress events. She started engaging with Fight Colorectal Cancer’s policy and advocacy work.

And something unexpected happened: she started healing.

“Advocacy is helping change the trajectory for someone else because of what you experienced,” she says. “And for me, even if it was that sliver of a little bit, that was worth it. All I’d been through was worth it if I could make a difference and make change for someone else.”

It sounds noble, and it is. But there’s something deeper happening here—something Caroline would eventually articulate as one of the most healing dimensions of her work:

The realization that your story matters. That your survival means something beyond your own life.

Personal Advocacy vs. Organizational Advocacy: The Difference Between Member and Staff

A few years into her volunteer work, Carole was offered a position: community engagement manager at Fight Colorectal Cancer.

The shift from being an advocate telling her own story to being an advocate who collects and amplifies others’ stories is seismic.

“Advocacy is self,” Carole explains. “It’s telling your story, it’s using your voice to affect change for yourself.”

But organizational advocacy is different. It’s bigger. It’s about zooming out from your individual disease journey and looking at the entire landscape: prevention, early detection, treatment, survivorship.

“When you get involved in advocacy in an organization, it really broadens the perspective. You get to dive into a bigger space of prevention care and advocating for not just people who are facing disease or have been diagnosed with disease, but we really get to unpack in a bigger space all the way back,” Carole says.

She went from the church member to the church staff. From someone saying “I have cancer, help me understand this” to someone saying “I hear your story, and I’m going to connect your story to other stories, to data, to prevention efforts, to policy change.”

“I get to take people’s stories and put a face to data, put a face to diagnostics, put a face to preventative care, put a face to survivorship,” she says. “Without humanity, without people, none of it matters.”

That’s the power and the difference: she still tells her story. But now, she tells it alongside hundreds of others. Her transplant story becomes evidence for why prevention matters. Her struggle becomes context for why screening saves lives.

The Healing Dimension Nobody Talks About

Carole and I both mention something crucial that rarely gets discussed in advocacy spaces: how healing the work itself is.

It’s not just that Carole wanted to help others. It’s that by helping others, she helped herself.

“Advocacy and being a part of opportunities to share your story and to promote wellness for other people has this really healing ability,” Carole says. “It’s softened the load for me. It’s made me feel like I’ve been able to contribute to others and meet others.”

She’s now a 10-year survivor living with long-term effects from chemotherapy: neuropathy in her hands that developed years after treatment ended. Physical side effects that don’t go away.

But being part of community, talking to people who understand “ornately” (intricately, deeply) what she’s experienced, has healing power that medicine can’t provide.

“The people in my blue family, which are now many of them are my chosen family, understand what I’ve experienced at a whole different level than anybody else will ever,” she says. “I’m so grateful that they have helped heal me and continue to help heal me.”

The Magic Wand: One Change Above All Others

If barriers disappeared, if she had unlimited resources and could change one thing, what would Carole choose?

Prevention.

“If everything was off the table, that’s where I would go because that’s going to save lives is by screening, by diagnosis, early detection and getting those polyps out,” she says. “So that’s hands down preventative care.”

It’s the upstream version of her own story. She survived metastatic cancer through extraordinary medical innovation and transplant. But how many people could avoid that journey entirely if screening worked? If polyps were caught early? If colon cancer was prevented rather than treated?

That’s where her energy now goes.

Circle of Life: From Hopeless to Hope-Giver

Here’s what moves Carole about her journey: she started in a place of helplessness. A place of not knowing the language of cancer. A place of feeling like she had six months to live.

“And then now with my work, I get to not tell my story as much, but I still have my story there,” she says. “But I get to hear people’s stories now who are sitting in the place where I was back 10 years ago. And I get to learn how to connect them and figure out where they need to have support.”

It’s a full circle. The person who was lost found community. Now she helps others find community. The person who needed hope now gives it.

“I really am so proud that now I get to give hope in a place where I felt hopeless and know that it makes a difference,” she says.

That’s not just advocacy. That’s transformation.

Connect With Carole

If you want to reach Carole or learn more:

• Social Media: Facebook, Instagram, Twitter/X — Find Carole there

• Fight Colorectal Cancer: fightcrc.org — Visit their website and use their chatbot

• Email Carole: caroline@fightcrc.org

• Read Her Writing: Check out Carole’s article on Fight CRC’s blog about survivorship and advocacy

Final Thoughts

Carole Motycka survived metastatic colorectal cancer. She survived acute liver failure. She received a liver transplant from a stranger who became family through an act of faith and generosity.

Ten years later, she’s still here. Not just surviving, but thriving. Living with the long-term effects of chemotherapy and the reality of being a transplant recipient, yet finding healing through the work of advocacy.

Her story is a reminder that surviving cancer is only the beginning. The real work, the transformative work, happens when survivors turn around and help the people coming behind them.

It happens in community. In connection. In the decision to take your story and use it to change the trajectory for someone else.

Carole did that. And in doing so, she found that advocacy heals the healer as much as it helps the patient.

Are you struggling with a colorectal cancer diagnosis or survivorship? Reach out to Fight Colorectal Cancer. Are you a survivor looking for community? Join Community of Champions. Your story matters. And your healing, like Caroline’s, might start the moment you decide to share it.

I’ve told this story before, but it keeps growing with me.

When I was first diagnosed, I approached my health like a player on the field. Show up. Execute the plays. Trust the system. I was present, I was compliant, and I thought that was enough.

Then I decided I needed to be the quarterback. Calling my own plays, directing my care, taking more control.

Then the coach. Studying the game, building strategy, pushing back.

But the real shift came when I realized my role wasn’t on the field or the sidelines at all. My role was General Manager. The GM doesn’t play every position or call every play. The GM builds the team — the right oncologist, the right specialists, the right support network — and makes sure everyone is working toward the same goal.

Here’s the thing about general managers, though: they never stop scouting. Not even when the team is winning.

Where I am today

Right now, I’m in a strange and fortunate place. My scans are clear. My ctDNA is positive. If you know, you know, it’s the kind of situation that doesn’t fit neatly into a treatment algorithm. No visible disease, but evidence it may still be there at a molecular level.

I have an amazing oncologist. The person who got me here. If this were only about loyalty, my roster would be set and I’d never take another meeting.

But this isn’t about loyalty. It’s about being the GM of a team facing a situation most teams never see.

So I’m making calls.

I’m reaching out to Mayo Clinic in Jacksonville, where the oncology team works directly with the transplant team, because in my situation, that collaboration matters.

I’m reaching out to MD Anderson, where they lead an MRD trial and run a dedicated survivorship program, because when your disease status lives in the space between “clear” and “cleared,” you want to talk to the people studying exactly that space.

This is not a trade deadline

Let me be clear about what this is and what it isn’t.

I’m not adding players. I’m not cutting anyone. My oncologist isn’t going anywhere, and reaching out to other centers isn’t a vote of no confidence in the team that got me here.

I’m interviewing. I’m gathering information. I’m sitting down with the experts who know the most about the specific, unusual situation I find myself in, so that whatever decisions come next are made by an informed patient, not a passive one.

That’s the GM’s job. You don’t wait until the team is losing to learn what else is out there. You scout constantly, you build relationships, you know your options before you need them. The worst time to start looking for a specialist is the moment you urgently need one.

Walking the walk

I write about this. I talk about it, on my podcast, on stages, on TV segments. And I’ll be honest: it would be easy for the General Manager framework to become a nice line I deliver, a tidy analogy that lands well in a talking point.

But I don’t believe in it because it sounds good. I believe in it because I live it. This season — clear scans, positive ctDNA, more questions than answers — is exactly the moment the framework gets tested. It’s easy to be the GM when the path is obvious. The job matters most when it isn’t.

So if you’re in remission, in treatment, in surveillance, or somewhere in between: your doctors work for you, not the other way around. Ask the questions. Take the meetings. Get informed about your specific situation from the people who know it best.

Your team doesn’t need you on the field.

It needs you in the front office.

If this resonated, share it with someone building their own team. And if you’re navigating your own version of the space between clear and cleared — I see you.

Every week I get to do something that genuinely fills me up: tell the world about people who are out here doing the work. Not the glamorous, headline-grabbing kind of advocacy, though sometimes it is that too, but the showing up, the training, the speaking when it’s hard, the listening when someone else needs it most. This week’s three advocates are proof that patient advocacy looks different in every disease community, and that every single form of it matters. Pull up a chair.

Tamika Felder — Cervivor, Inc. linkedin.com/in/tamikafelder

Tamika Felder has been a force in cervical cancer advocacy for longer than most people have known what HPV even means. This week she’s got something special on the horizon: she’s been selected as a speaker at the American Cancer Society’s 2026 Virtual State Engagement HPV Summit, running July 21–23. And on July 23rd, she and Virginia Marable will share the Cervivor story together — for the first time, in this way, as a pair. That detail matters. Tamika has built something real with Cervivor, a community rooted in survival and powered by sisterhood. To see her take the stage alongside someone who has walked that same road, to share not just a mission but a bond, that’s not just a presentation. That’s testimony. That’s what it looks like when you build something that outlasts the moment you were diagnosed. If you’re anywhere near the HPV or cervical cancer space this week, this session is not one to miss.

Michelle Reed, CSCA — Bladder Cancer Advocacy Network linkedin.com/in/michelle-reed-csca

Michelle Reed was diagnosed with non-muscle invasive bladder cancer at 43. Eight years later, she just completed training as a Survivor to Survivor volunteer with the Bladder Cancer Advocacy Network (BCAN). Let that sink in for a second. Eight years of living with a diagnosis, of navigating scans and scopes and uncertainty, and her response is to turn around and say, “Okay — who else needs to hear that they’re not alone?” That’s not a small thing. That is the entire engine of patient advocacy. The Survivor to Survivor model works because it’s not clinical. It’s human. It’s someone picking up the phone and saying, “I’ve been where you are, and here’s what I want you to know.” Michelle is now that person for newly diagnosed bladder cancer patients — listening, sharing, and doing the quiet, essential work of making a terrifying experience feel less isolating. I’m so glad she shared this milestone publicly, because it deserves to be celebrated out loud.

Vanessa Ghigliotty, CPN — GI Cancer Advocate linkedin.com/in/vanessa-ghigliotty-cpn-69974736

When a brand-new conference is being built from scratch, one designed specifically to empower patients and providers living with and after gastrointestinal cancer, and the organizers are choosing their keynote speaker, they picked Vanessa Ghigliotty. That tells you everything. The inaugural Empower Patient + Provider GI Conference lands in Washington DC on October 3, 2026, and Vanessa will be front and center. If you know Vanessa, you know she brings both credentials and lived experience to every room she enters, and she doesn’t let either one outshine the other. (Plus she was recently a guest on our podcast!) As a Certified Patient Navigator, she understands the system. As someone who has walked through GI cancer herself, she understands the human side of that system in a way no textbook can teach. Keynoting an inaugural conference means helping set the tone for everything that follows. That’s a responsibility, and it’s clearly in exactly the right hands.

These are your people. Go follow them, cheer them on, share their work in your communities.

And if you know someone doing advocacy work that deserves a spotlight — a caregiver, a community builder, a newly trained volunteer, a keynote speaker, anyone — nominate them for next week’s edition. Just reply to this email or find me at advocacyatwork.com. This newsletter exists because of people like the three above, and it only grows when you help me find them.

If someone forwarded this to you and you want it in your inbox every week, subscribe at advocacyatwork.com. It’s free, it’s real, and it’s full of people worth knowing.

This week, Archo Advocacy released its 2025/2026 ELAVAY Advocacy Intelligence Report, and if you follow patient advocacy news, you’ve probably already seen the headlines. Novartis leads on partnerships. Pfizer tops policy engagement. Johnson & Johnson holds the reputation crown. League tables make for easy sharing, and the industry will spend the next few weeks congratulating winners and quietly benchmarking against them.

But the number worth sitting with isn’t in the rankings. It’s buried further down, in the section on what advocates are seeing on the ground: only 49.6% of advocacy and community-based organizations maintain dedicated policy staff.

Half. In the middle of the most consequential decade for health policy most of us will ever live through.

A decade of lost capacity — and only a partial recovery

That 49.6% figure only makes sense in context. In ELAVAY’s 2016 survey, 76% of advocacy organizations reported dedicated policy staff. By the 2020-2021 survey period, that number had fallen to 21%. Today’s figure represents a recovery — but “recovery” is doing a lot of work in that sentence. We’re still 26.4 percentage points below the 2016 figure.

Think about what that arc means. Three out of four advocacy organizations once had someone whose job was to track legislation, build relationships with staffers, translate patient experience into policy language, and show up when the committee doors opened. By the 2020-2021 survey period, roughly four out of five respondents reported having no dedicated policy staff at all.

What happened

The survey tells us what happened, not why. So let me be clear that what follows is my read, not the report’s finding.

One plausible explanation is that the pandemic forced organizations into brutal triage decisions, and policy work — slow, relational, hard to measure — lost out to direct patient services that couldn’t wait. When your community is calling because they can’t get to chemo appointments or can’t afford their copays, you redirect every dollar and every person to the immediate crisis. That would have been the right call in the moment. It would also have carried a cost that didn’t show up until later.

Layer on funding contraction, staff burnout, and the reality that many community-based organizations never had the budget for a policy hire in the first place, and the drop starts to look less like a mystery and more like an inevitability. Policy capacity is the first thing cut and the last thing rebuilt, because its absence doesn’t hurt on any single day. It hurts across years.

I’ve watched this from inside the work, not as a policy professional, but as one of the volunteers. I’ve sat in congressional offices, on federal peer review panels, and on steering committees, and the pattern I notice isn’t about any one organization’s staffing. It’s about how much of the field’s institutional knowledge lives in a very small number of people, and how often the person in the room carrying a community’s policy ask is doing it on top of a full-time job and a treatment schedule.

Volunteer advocates are powerful. We bring lived experience no staffer can replicate, and the organizations that invest in training us get something they can’t hire for. But we are not a substitute for someone who wakes up every morning tracking markup schedules. When an organization has both, it’s formidable. When it has only us, it’s improvising, and improvisation doesn’t hold up across a ten-year policy fight.

What the gap years cost us

Here’s the part that should keep advocacy leaders up at night: the years when policy capacity sat at its lowest point were also the years when the biggest policy windows in a generation opened.

The Inflation Reduction Act’s drug pricing provisions were negotiated as ELAVAY’s policy-capacity measure hovered near its 2020-2021 low, when only 21% of surveyed organizations reported dedicated policy staff. Over the same stretch, PBM reform moved in Congress and in statehouses, and biomarker testing, step therapy, and non-medical switching bills moved through state legislatures, the exact issues that determine whether our communities can actually access the treatments the industry celebrates.

Who was in those rooms? Some organizations, certainly — the largest and best-funded ones. But by ELAVAY’s own measure, the surveyed field was operating at a fraction of its earlier capacity during the moments that mattered most.

The report offers a telling data point on how that played out. Asked about the IRA — arguably the most significant drug pricing law in decades — advocates are split: 43.0% expect it to benefit their patients, 34.4% expect a neutral or unclear impact, and 22.7% expect harm. That division may partly reflect real uncertainty about how the law lands across different patient populations, disease areas, and payer mixes. It may also reflect how unevenly advocacy organizations were positioned to engage while the legislation was taking shape.

That’s what losing policy muscle costs. Not a bad headline. A decade of downstream consequences.

This isn’t just a decision. It’s a financial asymmetry.

Here’s what makes the capacity gap more than a resourcing story: it opened during the exact years the industry across the table was posting record numbers.

Start with one company. Eli Lilly reported revenue growth of 45% in 2025, in a single year, from a base that was already enormous. That is the scale of the organization sitting across the table when access policy gets written.

Zoom out and the direction holds across the industry, and it holds even on the industry’s own preferred measure. Drug pricing arguments usually stall out on list price versus net price: manufacturers rightly point out that rebates and discounts now offset roughly 46% of invoice value, so headline prices overstate what companies actually collect. Fine. Use the net number. By IQVIA’s own accounting, the U.S. market grew at a 9.4% net compound annual rate over the past five years — after every rebate and concession — driven by oncology, immunology, and obesity. IQVIA projects the global market will keep growing at 5% to 8% annually through 2030, reaching roughly $2.6 trillion.

Read that against the ELAVAY arc one more time. The five years the U.S. market compounded at 9.4% net are the same five years advocacy’s policy staffing fell to 21% and clawed back to under half.

Neither number is a direct measure of lobbying capacity, and I won’t pretend otherwise. Rising sales don’t automatically mean bigger government affairs teams. But they illustrate the scale of resources available to major manufacturers relative to almost every patient organization in the country, and that structural gap is the point.

Now look at what happened to patients over the same stretch. This is where the asymmetry stops being abstract:

• Among stand-alone Medicare Part D plans placing preferred branded drugs on tier 3, the share using coinsurance rather than fixed copayments rose from 9.9% in 2020 to 71.9% in 2024. Coinsurance ties what you pay to a percentage of the drug’s price rather than a predictable flat fee — exposing beneficiaries far more directly to price increases. Notably, this shift did not happen to the same degree in Medicare Advantage drug plans, where comparable coinsurance use stayed below 5%.

• Expected out-of-pocket costs more than doubled for several commonly used preferred-brand drugs in those stand-alone plans. Semaglutide went from about $57 to $135; dulaglutide from about $54 to $128; rivaroxaban from about $47 to $95.

• Cost-related underuse is persistent and measurable. In the 2021 National Health Interview Survey, 8.2% of adults ages 18-64 who used prescription medication reported skipping doses, taking less, or delaying a fill because of cost. Among insulin users under 65, 20.4% reported cost-related rationing — 14.3% among those adequately insured, and 33.7% among those underinsured or uninsured.

And all of this landed on top of a broader cost-of-living squeeze. The same families absorbing bigger drug bills were navigating the sharpest U.S. inflation surge in roughly four decades, with higher costs for housing, food, and other necessities — which means the real erosion of their ability to afford treatment was steeper than the drug numbers alone show.

So stack the trends against each other. Industry revenue: up and to the right. Patient out-of-pocket exposure: up and to the right. Advocacy’s professional policy capacity, the one force in that equation whose entire job is to push back on behalf of patients, fell by more than half at its low point and has since recovered only part of the loss.

This is the part that reframes the whole conversation. The advocacy capacity gap wasn’t just an unfortunate internal decision that organizations made in hard times. It was a financial and political power shift. When advocacy lost its policy staff, patients didn’t just lose a few voices in a few rooms. They lost negotiating leverage at the precise moment the stakes, and the price tags, were climbing fastest.

Rebuilding without a policy hire

If you lead a small or mid-sized advocacy organization, the honest response to all of this might be: I agree, and I still can’t afford a policy director. Fair. So here’s what rebuilding can look like short of a full-time hire:

Join coalitions that pool policy capacity. Coalition memberships let ten organizations share what none of them could afford alone. The relationships and intelligence flow both ways.

Explore shared policy fellows. Some state-level coalitions and national organizations have experimented with policy staff who serve multiple member organizations. If yours hasn’t, propose it.

Train your volunteer advocates deliberately. Programs that put patients through structured research and policy training, the kind of preparation I’ve received through research advocacy programs and federal review panels, turn lived experience into something that functions in a policy room. That training is an investment, not a nice-to-have.

Ask more of your partners — carefully. Partnership shouldn’t just mean program funding. Where the arrangement is transparently governed, ask partners for nonexclusive educational briefings, public legislative tracking, and technical background. But hold the line hard here: retain your own policy positions, disclose the financial relationship, and never let a funder’s government affairs shop become your source of truth. An organization that outsources its policy thinking to the industry it negotiates with hasn’t rebuilt capacity. It’s rented someone else’s.

None of this fully replaces a dedicated hire. But 49.6% doesn’t become 76% again through wishing. It gets rebuilt through a thousand small decisions to treat policy capacity as core infrastructure rather than a luxury.

The question under the rankings

The ELAVAY report rewards companies for showing up in the rooms that shape patient access. That’s a reasonable thing to measure, and the companies that lead those tables have earned recognition.

But the harder question isn’t which companies show up. It’s whether the patient community can still afford to show up across from them. Because a room where one side commands resources at a scale the other has never approached, and where the other side’s professional capacity fell by more than half and has only partly returned, isn’t much of a negotiation. It’s a room where a lot gets decided before anyone sits down.

The rankings will change next year. The capacity gap underneath them is the story that compounds, and closing it is on us.

Sources: Archo Advocacy, 2025/2026 ELAVAY Advocacy Intelligence Report (July 2026) — staffing and IRA sentiment figures are from ELAVAY’s survey series; methodology detail on cross-year comparability is limited in the public release. Industry growth figures: IQVIA Institute, Global Medicine Use Trends 2026 (March 2026) — U.S. 9.4% five-year net CAGR is historical; the 5-8% global CAGR and ~$2.6T by 2030 are IQVIA projections. Eli Lilly 2025 revenue growth: Lilly earnings report. Medicare Part D coinsurance and drug-specific out-of-pocket figures: USC Schaeffer Center analysis published in JAMA (2025). Cost-related medication underuse: 2021 National Health Interview Survey. Insulin rationing: 2021 study of U.S. insulin users under 65.

She was a young mom. She was planning to study for her LSATs. She was going to be a lawyer. She had dreams, plans, a future mapped out in her mind.

Then she was diagnosed with stage 4 colon cancer.

“Cancer throws you this big wrench into your plans,” she says, “and everything kind of gets disarrayed and discombobulated.”

But here’s what makes Vanessa’s story extraordinary: it didn’t stay disarrayed. She walked into her first cancer support group to find a room full of wealthy people in their 60s and 70s, getting treatment before retirement. She was a baby by comparison, and she was completely alone.

At Memorial Sloan Kettering, she was surrounded by generational wealth. By life experience. By people who had already lived their lives. And she hadn’t even started hers.

“Everything that could go wrong when I was diagnosed with cancer did,” she recalls. “Every kind of setback that you get in your treatment, I got it. Every side effect, everything that never happens. I was the one in a million girl at MSK.”

But instead of breaking her, that one-in-a-million experience gave her clarity: I don’t want people to have to go through what I went through.

The Dark Ages of Colorectal Cancer: Before Young Adult Advocacy Existed

When Vanessa was diagnosed, colorectal cancer was considered an old man’s disease. There were no young adult support groups. The American Cancer Society had programs for breast cancer and prostate cancer, but when she looked for colorectal cancer resources for people her age, there was nothing.

The closest person in age to her in any support group was 45. And even then, they didn’t connect—because in those days, different cancers stayed siloed. Breast cancer patients didn’t associate with colon cancer patients. And young adult cancer patients didn’t exist as a category.

“I had no one to go to. I had no one to find support to advocate,” Vanessa says. “There are so many things in your journey when you’re sick that you don’t know how to handle that you learn from your peers.”

So for years, she learned alone. She navigated a fragmented medical system by herself. She figured out how to survive a disease that nobody her age was supposed to have.

But eventually, she found the Colon Cancer Alliance—a tiny organization out of Ocala, Florida, with a staff of maybe ten people. There was one person there, Jeannie Hansen-Moore, who changed everything: she was a patient navigator, and she understood that cancer affected not just patients, but caregivers too.

“Everything in their philosophy and everything they did matched up with what I was feeling and what I wanted,” Vanessa recalls.

And then came the moment that would define her advocacy journey.

The Stupid Cancer Moment: When She Found Her People

Vanessa was at a walk in New York City, by the water, for Memorial Sloan Kettering. It was gorgeous. She was with her ex-husband and her mom.

A young man approached her with a survey. He was asking about young cancer patients.

“I flipped,” Vanessa remembers. “I was like, ‘Oh my God, young people, what? Yes.’ And I’m like, ‘I could tell you a million things.’ And my ex-husband was like, ‘You have to calm down.’ And I was like, ‘I can’t. I have been waiting for this. Hello. I’ve been talking about young onset cancer and everyone’s telling me it’s not a problem. You have no idea what you’re talking about.’”

That young man was Matthew Zachary, founder of Stupid Cancer.

He invited her to their first meetup, and when she walked in, everything changed.

“Everybody looked like me. Everybody looked like me,” she says, her voice filled with emotion even now, decades later.

She walked into that room and saw people her age. People facing cancer at a life stage when nobody expected it. People who understood what it meant to have your future stolen from you at 28.

“I realized I need to meet people. I’m not a wallflower. I’m a doer,” she recalls. “I walked up to the first person, and it was Matthew Zachary, and we just bonded.”

That moment—walking into a room full of people her own age, all fighting the same disease, all facing the same isolation she’d endured—became the catalyst for everything that came next.

From Anger to Action: How Advocacy Actually Works

Vanessa’s definition of advocacy has evolved dramatically over 24 years.

When she started, she thought advocacy meant being loud and strong. Angry. You must hear me. This is going to be an epidemic with young people.

She was right, colorectal cancer was shifting toward younger populations. She could see it coming. She went to conferences. She watched politicians’ responses. She gathered data. And she was furious about what she was learning.

“Anger does not get you anywhere,” she says now, with the wisdom of someone who’s spent two decades learning this lesson. “Anger gets doors closed for you.”

What actually moves systems isn’t rage. It’s relationships. Consistency. Showing up, again and again, with the same message and the same people beside you.

It’s the slow wheel that keeps turning.

“Here we are 24 years later and the screening age is lowered to 45,” she points out. “And what I’m hoping is that maybe another 10 years, another five to 10 years, we can get it lower to 40.”

That’s not a headline victory. That’s not a dramatic policy reversal. That’s the slow, grinding work of advocacy—year after year, conference after conference, conversation after conversation, watching the needle move incrementally toward justice.

“The screening age is lowered to 45. We got all the insurances to come along—not only public insurance, but private insurance too. I mean, this is huge. And that’s the difference in advocacy now is that it’s that slow wheel that just keeps going and you keep going and you have other people gathered around you with the same purpose and unite in one voice.”

The Role of Community: Why Finding Your People Matters

Vanessa is adamant about something: not everyone is an organizer. Not everyone is loud or outgoing or assertive.

“Not everyone is outgoing. Not everyone is assertive,” she says. “Not everyone knows how to take the chaos of cancer and the chaos that cancer brings into your life and build something from it.”

That’s why she emphasizes finding your place, not forcing yourself into someone else’s vision.

She found hers in the Colorectal Cancer Alliance, alongside people like Jennifer Butler (then Jen Beckman), who shared her doer energy. They weren’t just talkers. They were people who, mid-conversation, were already on their phones making things happen.

“When I find people who are that way like me, it’s like I have goosebumps,” Vanessa laughs. “Because I know together we can help people who don’t know how to help themselves because not everybody does.”

But here’s the critical part: she acknowledges that not everyone is going to fit into an organization. And that’s okay.

“Every single organization brings something different to the table,” she explains. “You have to sit there and say, where do I fit in? Where do I feel comfortable and what feels like home to me?”

And if the answer is nowhere? You can still be an advocate.

The Power of Social Media Advocacy: You Don’t Need an Organization

This is something Vanessa wishes more people understood: you don’t have to join a nonprofit to be an advocate.

“If they’re not a joiner, if they don’t gel with an org, what they can do is put their story out there on social media,” she says. “You put little tidbits. If you find an article relating to somebody just being diagnosed with colorectal cancer, you retweet or repost that article along with a snippet of your story that relates to that article. And then do hashtags.”

Most people don’t understand the power of hashtags. They don’t realize how far a story can travel when it’s paired with the right tags, the right article, the right moment.

“There’s a desperate need to get the messages that we all have out to the general public, not just amongst ourselves or the medical community,” Vanessa emphasizes. “We need to get out more to the general public and more to the general practitioners who don’t go to ASCO, who don’t go to AACR.”

Rural doctors. Busy general practitioners. Overworked clinicians who never see young people with colorectal cancer because they’re not looking for it.

Those doctors need to hear from you. Not from an organization. From you. A real person. A survivor. Sharing your real story.

“People who don’t gel with organizations, you have so much power to do that just from your own home,” Vanessa says. “We all have that power to do that. It’s amazing.”

The Helper Learning to Ask for Help

After 24 years of showing up for others, Vanessa recently learned something about herself: she didn’t know how to ask for help.

At Cologuard Classic (a Champions Tour golf tournament and major colorectal cancer conference), she had a Crohn’s attack. She got really sick. Her instinct was to hide away in her room. To suffer alone, like she’d always done.

But this time, she did something different. She told her close friends.

“And I can’t tell you how they came through for me. I can’t even explain how they surrounded me and protected me and made sure I was okay,” she recalls, her voice catching slightly. “And that was the first time I ever asked for help. And it was beautiful to know that I got the help that I always give.”

It took 21 years of advocacy for the helper to learn how to be helped.

The Three Asks: If Resources Were Unlimited

If money, time, and institutional gatekeeping were off the table, Vanessa would change three things, all rooted in her experience as a young woman in a disease defined by age.

First: A law protecting young people from diagnostic delays.

General practitioners are the biggest gatekeepers, and they don’t believe young people can have colon cancer. A 19-year-old comes in bleeding from the rectum, and the doctor assumes hemorrhoid. A digital exam doesn’t reveal anything (because hemorrhoids are small), and the doctor sends the patient home.

“If a patient is literally 19 years old and they’re bleeding from the rectum, don’t assume that it’s a hemorrhoid,” Vanessa pleads. “Please, please send younger people for diagnostic.”

She would make it law that doctors understand the difference between screening (looking for disease in healthy people) and diagnostic (investigating symptoms). And she would mandate that a young person with symptoms gets the diagnostic they need—not assumptions, not wait-and-see, but actual investigation.

Second: Young adult cancer clinics at every major cancer center.

Dana Farber created a separate young adult cancer clinic. Vanessa wants every major cancer center to do the same.

“I fought very hard to be this age, to be AARP. And I’m proud of it. I love it. I’m in a different place in my life, but I will never forget the struggle I had as a young cancer patient,” she says. “There should be a separate protocol and a separate program for young adults at every single cancer institution, clinic, hospital.”

Young people need different things than older people. They need fertility preservation conversations. They need discussion of how cancer will affect their careers, their relationships, their identity as young adults. They need peers. They need a separate space that understands their unique needs.

Third: Transportation assistance for cancer care.

This one is less visible but potentially most impactful: patients can’t get to their treatments, tests, and procedures because they don’t have transportation.

“A patient navigator, I can’t tell you how many times this happens,” Vanessa says. “If you are going in for a colonoscopy, you need to take off two days of work because of prep and the day of the test. You can’t drive yourself there and you can’t drive yourself home. So if you don’t have a ride, guess what’s going to happen? You’re not going to go get your colonoscopy.”

A transportation program wouldn’t just be nice, it would save lives. It would make preventative care actually accessible, not just theoretically available.

24 Years Later: What It Means to Earn Your Seat

Vanessa makes a point that younger advocates need to hear:

“I’m a 24-year survivor, that’s 22 years that I’m an advocate. And 22 years later when big decisions are made, I’m considered and I’m spoken to. Where I was dismissed, I earned that. I earned that seat.”

You don’t start with influence. You earn it. Through consistency. Through showing up. Through building relationships. Through decades of doing the work when nobody was watching.

“If I’m doing something and I said, ‘Oh, we should do X, Y, and Z,’ while we’re speaking, I’m on the phone,” she describes herself. “I’m looking at you and looking at my phone and I’ll say, ‘Oh, this place has that, we could utilize this.’”

That’s what earned her seat. Not anger. Not volume. Consistent, visible action.

Connect With Vanessa

If you want to reach Vanessa:

• Google her name: Vanessa Ghigliotty — everything comes up, including social media handles and stories

• Patient Navigation: If you need help navigating the medical system, she’s there

• Support and Connection: If you need someone to talk to, or help finding support groups (online, in-person, or helplines)

• GI Cancers Alliance: gicancersalliance.org — Vanessa recently joined and can help connect you to member organizations across different cancer types

Final Thoughts

Vanessa Ghigliotty survived stage 4 colorectal cancer in the early 2000s, when she was the only young person in every room she entered.

Twenty-four years later, she’s helped transform colorectal cancer from an “old man’s disease” to a disease we screen for at 45 (and hopefully soon at 40). She’s helped ensure that young adults with cancer have spaces where they belong. She’s mentored countless advocates and navigated countless patients through a system that still doesn’t always believe in them.

But her greatest lesson might be the simplest one: advocacy isn’t about being loud or angry or heroic. It’s about consistency. It’s about finding your people. It’s about showing up, again and again, with the same message and the same commitment.

“The slow wheel that just keeps going,” she calls it.

It took 24 years to lower screening ages. It took 24 years to earn her seat at the table. It took 21 years before she learned to ask for help.

But it’s working.

And if you’re reading this, thinking you don’t have what it takes to be an advocate—you do. You just have to start somewhere. A social media post. A retweet. A story. A conversation.

That’s how movements start. That’s how wheels turn. Slowly. Then all at once.

Are you a young adult facing cancer? Visit GI Cancers Alliance to find support. Are you a survivor isolated from your diagnosis? Start sharing your story on social media. One post at a time, one hashtag at a time, you might be the person someone else has been waiting to find.

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.