Advocacy isn’t only about having something to say. It’s also about the opportunities we create for people to learn, contribute, and be heard.

This week, I’m highlighting Gretchen McNally, Pamela Deasy, and Julia Hahn. Their posts offer three different perspectives on that work: learning alongside patient advocates, building the confidence to contribute to research, and bringing the people behind colorectal cancer advocacy into the spotlight.

What connects them is the space they’re helping create for meaningful participation.

Gretchen McNally: Learning alongside patient advocates

Gretchen McNally, a nurse practitioner scientist at The Arthur G. James Cancer Hospital, shared a reflection from the SWOG Cancer Research Network fall meeting.

What stood out to me wasn’t just her enthusiasm for the meeting. It was her recognition that connecting with multidisciplinary peers—including patient advocates—is influencing her work.

She also thanked The Hope Foundation and the Mentoring Advanced Practice Providers program, or MAPP, for supporting the opportunity.

That’s why I wanted to feature Gretchen this week. Her post recognizes patient advocates as part of the community she learns from, not as people separate from the work.

For me, that’s an important part of advocacy: creating opportunities where people with different experiences can learn together and carry those perspectives back into what they do.

Read Gretchen’s original post

Pamela Deasy: Bringing lived experience into research

The All-Island Cancer Research Institute shared Pamela Deasy’s reflections on participating in VOICE-Ireland, its Scientific Training for Cancer Patient Advocates programme.

Pamela’s experience was featured in Digestive Cancers Europe’s newspaper, in an article titled “From the Other Side of the Laboratory Door.”

One passage especially stayed with me:

“With knowledge came confidence. I now see my role as a patient advocate more clearly. It extends beyond telling my story. I can bring my experience into the places where research is designed, questions are chosen, and decisions are made.”

That distinction matters.

Sharing a personal story can help people understand an experience. Bringing that experience into research discussions creates another opportunity: helping shape the questions being asked and the decisions being made.

I chose Pamela because she describes that connection so clearly. Knowledge and confidence aren’t just personal benefits here. They help her see where, and how, she can contribute.

Read the post about Pamela and follow its link to her article.

Julia Hahn: Bringing the people behind advocacy into view

Julia Hahn, Director of Communications and Development, shared a reflection after the BE SEEN ALIVE Awards.

Her post acknowledged the work behind the event: planning, partnerships, communications, storytelling, and the many people needed to bring it together.

But the part she valued most was the people.

Julia described getting to know ALIVE honorees through interviews for the From Carpools to Chemo podcast—survivors, caregivers, physicians, and volunteers who have turned their experiences and expertise into action.

What stood out to me was the connection between the celebration and the listening that came before it.

The awards were a visible moment. The conversations helped reveal the people and work behind that moment.

I chose Julia because her reflection keeps the focus there: on people working to change the trajectory of colorectal cancer, and on the opportunity to help their stories reach others.

Read Julia’s original post.

Three different ways to make room

Gretchen’s post is about learning alongside others. Pamela’s is about building the confidence to contribute. Julia’s is about listening to people and helping their work be seen.

Together, they left me thinking about a question:

Where are we creating opportunities for people to do more than share their experience, to help shape the work itself?

That’s the kind of advocacy I want to keep highlighting here.

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Mila was 26 when she was diagnosed with colorectal cancer in 2020.

Today, she speaks in rooms where cancer policy and research are shaped. She has spoken at the European Commission and the European Parliament. She has participated in the first global think tank on early-onset colorectal cancer. She has trained through programs focused on patient advocacy, cancer biology, policy, clinical trials, and research.

She is helping build community for young adults with cancer across Europe.

But before any of that, Mila spent two years being told not to worry.

“You Have Nothing to Worry About”

Mila was building the life she had worked for.

She had landed a good agency and was working full-time as an actor. She was busy, traveling, meeting people, learning, and moving forward. From the outside, she was in the middle of the life she had imagined for herself.

But her body was telling her something was wrong.

She was bloated. She was in pain. Her symptoms became more difficult to ignore every month. So every month, she went back to her GP.

And every month, she heard some version of the same message.

You are overreacting.

It is probably hormonal.

It is probably IBS.

You are swallowing too much air when you eat.

You are young. You have nothing to worry about.

No meaningful investigation. No blood test. No plan that matched how unwell she was becoming.

Mila asked for a second opinion. Then a third.

Still, she was dismissed.

The pain got worse. The bloating got worse. She reached a point where she could barely function.

But because she was young—and because the people around her could not imagine colorectal cancer happening to someone her age—her symptoms were treated as evidence that she was worrying too much, not evidence that something needed to be investigated.

A colonoscopy was scheduled for March 2020.

Then COVID happened.

Because it was not considered urgent, her appointment was postponed until the end of May.

That is when they found the tumor.

The Conversation She Was Never Prepared For

Within a month, everything moved quickly.

There were scans. Tests. Iron transfusions because her iron levels were dangerously low. Surgery.

The surgery went well.

Then Mila was discharged with an oncology appointment scheduled about two weeks later.

No one clearly told her she had cancer.

No one explained what they had found. No one walked her through the possible scenarios. No one said, “This is what the next appointment is about.”

She assumed someone would explain.

In May 2020, in the middle of the pandemic, she sat in a waiting room with her mother. They wore masks. Her mother sat at a distance from her.

Then Mila was called into the oncologist’s office.

She remembers details from the room more clearly than she remembers the conversation itself: the pictures on the wall, the way the books were arranged, the cracks in the floor.

The oncologist spoke for ten or fifteen minutes.

Then she noticed something in Mila’s face.

“You didn’t know that you have cancer,” the doctor said.

“What do you mean?”

That is all Mila remembers from that moment.

She remembers her mother crying. She remembers her mother speaking in Spanish, though the words did not make sense. She remembers feeling unable to move, speak, think, or process what was happening.

For four days, she felt numb.

Her mother called relatives and friends because Mila could not do it herself.

And then her mother asked a question that changed everything again.

Did Mila want to be a mom someday?

Of course she did. She had just turned 26. She was supposed to be building her life, moving forward in her career, maybe moving away, and becoming the person she had always hoped to be.

She was not supposed to be confronting fertility preservation and her own mortality.

The fertility-preservation process was rushed.

It did not work out.

Then treatment began.

The Gap After Treatment

Treatment ended in 2021.

But for Mila, that was not the end of cancer.

Long-term side effects began to emerge. So did questions no one seemed prepared to help her answer.

How do you return to work after cancer when you are still trying to understand what your body can do?

How do you talk about fertility, intimacy, body image, dating, finances, and long-term side effects when you are only in your twenties?

How do you explain to friends your own age that you are trying to rebuild a life while everyone else appears to be beginning theirs?

And where do you go when you are not a child with cancer—but do not feel represented in the adult cancer spaces around you?

Mila realized that the healthcare system had categories for people like her, but not necessarily a place for them.

Pediatric care existed.

Traditional adult oncology existed.

But young adults diagnosed with cancer often seemed to exist somewhere between the two.

They were too old for pediatric programs and too young for systems built around the needs, assumptions, and life circumstances of older adults.

“There’s no support for people like me,” Mila realized.

No one to help her navigate fertility issues.

No one to help with intimacy questions.

No one who understood the challenge of returning to work or education after treatment.

No one who could fully explain how financial toxicity, isolation, and long-term side effects can shape the rest of a young person’s life.

The system was not built with her in mind.

Finding Her People

Mila reached out to major organizations in Spain looking for support.

The response, in one form or another, was that they did not know how to help her. She was too young. She did not fit the categories they already had.

“What am I supposed to do?” she thought. “I do need that support.”

It was not until 2024—four years after her diagnosis—that Mila met other adolescent and young adult cancer patients.

For the first time, she found people who understood without needing every part of her experience translated.

She learned about Youth Cancer Europe, a pan-European organization for adolescents and young adults with cancer. She connected with Digestive Cancers Europe and an event focused on early-onset colorectal cancer.

And something shifted.

“I have a community,” she realized. “I have a safe space. I feel like I belong again. And I don’t have to explain anything at all because they just understand.”

That feeling matters.

Community does not erase what cancer took from someone. It does not undo delayed diagnosis, fertility loss, financial strain, or the physical consequences of treatment.

But it can give people language for what they have lived through.

It can give them peers.

It can give them a place where being young with cancer is not an unusual story that needs to be defended or explained.

And it can turn isolation into advocacy.

Building What Was Missing

Mila is now using her experience to help change the systems that failed her.

She has spoken at the European Commission and the European Parliament. She has been part of the first global think tank focused on early-onset colorectal cancer. She has spoken at ESMO GI, one of the world’s major gastrointestinal cancer meetings.

She has pursued advocacy training through programs including Weekend Academy, UPATI, and the VOICE course at Barts Cancer Institute. Through that work, she has learned about cancer biology, clinical trials, regulation, policy, research, and the practical ways patient advocates can influence decisions.

“It’s mind-blowing,” she says. “I wouldn’t be here doing what I’m doing if it wasn’t because of this nightmare. But it brought me so many wonderful people and wonderful opportunities, and I’m learning so much with them and from them.”

Mila did not choose cancer.

She did not choose to be dismissed.

She did not choose to have her care interrupted by a pandemic or to learn in an oncology office that she had cancer when she had not even been told why she was there.

But she is choosing what comes next.

She is helping create the bridge that was missing when she needed it most.

What Young Adults Need

If money, time, and gatekeeping were not barriers, Mila knows what she would build.

Dedicated cancer spaces for adolescents and young adults.

Places where young people do not have to choose between being treated in a pediatric environment that no longer fits and an adult oncology environment that may not understand their stage of life.

Places with clinicians and support staff trained to communicate clearly with younger patients.

Places that address fertility, sexuality, mental health, education, employment, finances, relationships, survivorship, and long-term side effects as part of cancer care—not as afterthoughts.

Places where a patient from a rural community can access specialized support without having to fight their way through a fragmented system alone.

Mila has seen that dedicated AYA spaces can change the experience of cancer care.

When young adults are treated as a distinct population—not an exception or an inconvenience—they can be seen, heard, and supported in ways that reflect their actual lives.

That should not be a radical idea.

More Than Her Diagnosis

Mila is not only a cancer advocate.

Her favorite color is black. She loves music, including Fontaines D.C., Hilary Duff, One Direction, Blink-182, Taylor Swift, Paramore, All Time Low, Olivia Dean, and Psalm 41. She still buys CDs because they bring her joy.

She wants to study Gaelic in Glasgow next summer. She has been to Edinburgh twice, and Scotland keeps calling her back.

She loves Sudoku.

And she is serious about coffee and pastries.

When Mila travels, she builds detailed Google Maps lists of coffee shops, pastry places, restaurants, and local spots worth visiting. If you need a recommendation in a city she knows, she probably has it mapped.

Those details matter.

Cancer can take up so much space that it becomes the first thing people see. But Mila is also someone who finds joy in a great coffee, a beautiful pastry, a new city, a favorite album, a puzzle on a plane, and time with people who understand.

That is part of what young adult cancer care needs to protect: not just survival, but a person’s ability to continue having a life that feels like their own.

The Real Lesson

Mila’s story is not only about persistence.

Yes, she kept asking questions when people dismissed her. She sought second and third opinions. She continued looking for support when established organizations did not know where she fit.

That persistence matters.

But the burden should never have been entirely on her.

No one should need extraordinary self-advocacy to receive ordinary care.

No 26-year-old should have to spend years convincing clinicians that their symptoms are real. No young adult should leave surgery without a clear explanation of a cancer diagnosis. No survivor should finish treatment and discover that there is no place designed for the questions that will define the rest of their life.

Young adults with cancer should not have to build their own support systems after cancer.

Healthcare systems should build them before people need them.

Mila is helping make that future more possible.

Connect With Mila

You can find Mila on LinkedIn under Mila Ogalla Toledo.

She is also involved with the GI Cancers Alliance and can help connect people with the work happening through Youth Cancer Europe and Digestive Cancers Europe.

If you were diagnosed as a young adult, what part of cancer care made you feel least seen?

And what support would have made the greatest difference?

Every week I sit down to write this and I think: how is it possible that people this committed exist in the world, and how did I get lucky enough to know them? This week’s three advocates were all on the road — at summits, at conferences, in rooms where the future of cancer care is being shaped — and they brought everything they had. That’s the job. That’s the calling. Let me introduce you to them.

Elise Roth Tedeschi | LinkedIn

Elise is a Patient Research Advocate on the NCI Pancreatic Task Force, and this week she was on a panel at PanCAN’s Scientific Summit in San Diego. She came home fired up — about new trials, about early detection tests that could genuinely change the prognosis curve for pancreatic cancer, which remains one of the most brutal diagnoses anyone can receive. Elise doesn’t just sit in these rooms. She shapes what happens in them. And she has a line that I want printed on a poster and hung in every research institution in the country: “How can you design a car without ever driving one?” That’s the whole argument for patient involvement in research, said better than I’ve ever heard it. When patients are at the table, the science gets better. The trials get smarter. The questions being asked are the right ones. Elise is proof of that. Follow her on LinkedIn and watch what she’s doing, she is moving the needle on one of the cancers that most urgently needs it.

Mark Moore | LinkedIn

Mark Moore spent his weekend at the Fight Colorectal Cancer Research Advocacy Summit in Springfield, Missouri, surrounded by colorectal cancer research advocates from across the country. As someone who has spent a lot of time in those kinds of rooms, I know what they cost — the travel, the time away from family and work, the mental and emotional bandwidth it takes to stay engaged and keep learning. Mark does it anyway, because he’s the co-founder of Ole Creek Health, and because he knows that what he learns in Springfield becomes action back home in Durham. Closing screening gaps is the mission, and it’s not abstract to him, it’s neighborhoods and people and lives. His reminder this week is one I’ll never stop amplifying: if you are 45 or older, please talk to your doctor about getting screened for colorectal cancer. That conversation takes five minutes. It can save your life. Mark is the kind of advocate who makes you want to be better at this work. Go connect with him.

Lou Lanza | LinkedIn

Lou Lanza is a survivor, an advocate, and a mechanical engineer — which means he brings both his lived experience and his systems-thinking brain to everything he does. This week he drove from South Jersey to Detroit for three full days at the Society for Integrative Oncology’s 2026 International Conference. He is part of SIO’s Patient Advocate Special Interest Group, which works to ensure that patients have a real voice in evidence-based supportive care — the kind of care that addresses the whole person, not just the tumor. That matters enormously. It matters to quality of life. It matters to survivorship. But here is the detail that made me laugh out loud when I read his post: Lou brought his famous pizzelles. Homemade Italian wafer cookies, apparently, are an elite-level networking strategy. Everyone in that conference hall now knows Lou Lanza, and honestly, that’s how advocacy works too — you show up, you bring something of yourself, and you make people want to keep talking to you. Lou did all of that.

That’s Vol. 18. Three advocates, three cities, one shared conviction that showing up matters.

If you’re not subscribed yet, I’d love to have you here, just hit the button below. And if you know someone doing advocacy work that deserves to be celebrated, nominate them for a future edition at advocacyatwork.com. These people deserve to be seen.

He wasn’t a scientist. He wasn’t a doctor. He wasn’t someone with a natural pathway into cancer advocacy.

Then in September 2022, almost four years ago, he got diagnosed with stage 4 grade 3 small bowel neuroendocrine tumor.

And everything changed.

The Symptoms Nobody Names

The weird part is that the symptoms that got him to his diagnosis were so strange and confusing that nobody could quite figure out what was happening.

He had gastrointestinal problems that came and went randomly. Out of nowhere, he’d get shortness of breath without any exertion. He’d have facial flushing, hot and intense, but without any sweating.

These weren’t the kind of symptoms you type into Google and get a clear answer. These weren’t “go to the emergency room right now” symptoms. These were the kind that made everyone scratch their heads.

What he later learned was that these were symptoms of carcinoid syndrome.

His neuroendocrine tumor was functional. That means it was secreting hormones into his bloodstream. And those hormones created this strange collection of symptoms that led doctors to his diagnosis.

“In some ways,” Jud says, “I’m thankful I had a functional NET. A lot of people, their NETs will grow and grow with no signs at all until they cause a physical obstruction or some other acute problem.”

So the symptoms that made his life miserable for over a year? They probably saved his life.

What NET Actually Is

Here’s the thing. Most people hear “neuroendocrine tumor” and their brain shuts down.

It sounds like brain cancer. It sounds like something your neuroendocrine system—which is in your brain, right?—is attacking.

But that’s not what NET is.

You have neuroendocrine cells all throughout your body. They’re in your gut. They’re in your lungs. They’re in various organs. When those cells go rogue, that’s when NET develops.

It’s not a tissue cancer. It’s a cancer that forms from neuroendocrine cells. And it’s a solid tumor, but it’s distinct from other kinds of cancers.

The umbrella term is NEN, neuroendocrine neoplasia. Under that umbrella, you’ve got NETs and NECs and insulinomas and all sorts of other variations. But they all have one thing in common. They form from neuroendocrine cells that started misbehaving.

Historically, NET was considered rare. And it was. But incidence is increasing. Some of that is probably better imaging and better testing. But a lot of it is probably that NETs went undiagnosed for years. People were told their symptoms were something else. And even after death, it wasn’t always attributed to NET.

That’s how misunderstood this cancer has been.

The Specialist He Found

Jud was fortunate in one crucial way.

His diagnosing oncologist, a general community oncologist, knew enough about NET to know he needed to see a specialist. And he referred Jud to a NET specialist at Mayo Clinic.

This is unusual. A lot of NET patients go a very long time before they ever see a specialist. Some never do.

But Jud got that referral quickly. And very soon after his diagnosis, he was enrolled in a clinical trial.

His first line of treatment was radioligand therapy, or RLT. This was cutting-edge nuclear medicine. Not traditional chemotherapy. Not radiation therapy as most people understand it.

Nuclear medicine imaging that could help target cancer cells. And then nuclear medicine therapeutics to treat those cells.

It was a whirlwind introduction to being a cancer patient. And it sparked something in him.

Curiosity.

When Lightning Struck

For a while after his diagnosis, Jud did different things on different tracks. He was involved in clinical trial advocacy. He was learning about radiotheranostics. He was connecting with other cancer patients, especially men.

But the real moment came in 2024.

Novartis asked him to speak at a full team meeting. Everyone involved with radioligand therapies. Doctors. Scientists. Researchers. Marketing teams. Operations teams. All of them.

Jud shared his journey. How he’s doing. His perspectives on receiving this treatment and what it meant for his life.

And afterward, something happened that he didn’t expect.

So many people told him they’d never met a patient before. They’d never seen the actual human impact of their work. They’d spent years developing drugs and therapies and strategies. But they’d never sat in a room with someone who had actually received what they’d created.

“It was kind of like lightning struck,” Jud says. “Afterwards, so many people told me how they had never met a patient before, and it was so powerful for them to see how their work is actually helping people.”

That moment changed how he saw his role.

Three Areas of Focus

Now Jud focuses on three main areas of advocacy.

Neuroendocrine cancer: He’s a patient. He’ll be one for the rest of his life. Stage 4 NET is considered incurable but treatable. He’s learned a lot of fellow patients. He sees the need for support, awareness, education. He does peer education and counseling. He’s involved with scientific research and advocacy specific to NET.

Radiotheranostics: This is the umbrella term for the therapy he received. Nuclear imaging like PET scans combined with nuclear medicine therapeutics. It’s a fascinating and really exciting area of cancer research. But there’s a real lack of understanding and confidence around it in the patient community. And beyond that, it’s expanding to colorectal cancers, breast cancers, lung cancers, brain cancers. Nuclear medicine is about to explode with new applications.

But patients are afraid of nuclear radiation. Of course they are. And they don’t understand what radiotheranostics actually is. So Jud’s mission is to help patients understand it. Not to cheerleader for it. But to give them the information and context they need to make informed decisions.

“The name of the game for me,” he says, “is we know we all have emotions and perceptions and other psychosocial challenges that might come into play, but if I can help to move the needle and help patients have a little more trust and understanding with what nuclear medicine is about, I think that will go a long way.”

Men’s cancer peer support and wellbeing: Jud doesn’t have prostate or testicular cancer. But he knows that men isolate more than women do when facing cancer. Men have more psychological and relational challenges. Jud struggled with depression early on. He felt like he had to just suck it up and deal with it. Now he’s committed to being there for other men going through it.

How He Got Started

Jud didn’t wake up one day planning to be a cancer advocate.

He was part of a clinical trial that sparked curiosity. He started following scientific developments. He attended conferences. He watched webinars. He read journal articles. And because he was public policy and finance guy, he started thinking about how this research gets funded and moved forward.

Then he got asked to speak at Novartis. And that became the spark that lit everything.

He was recently asked to join the ECOG Akron Cancer Research Group’s patient advocacy committee. So now he’s part of cancer research discussions about all kinds of GI cancers, especially NET.

And next March, he’s speaking on a panel at the World Theranostics Conference in Osaka, Japan. His bucket list place. His cancer advocacy is literally taking him around the world.

But here’s what matters. None of that would have happened if he’d said no to Novartis.

“It just took that one time,” he says, “to really change the course of how I see myself in the cancer universe, and it’s incredibly gratifying.”

The Bridge Builder

What Jud sees as his real strength is something different from the science or the research knowledge.

He sees himself as a bridge builder.

There’s a gap between patients and researchers. Between patients and pharma. Between patients and the healthcare system. And a lot of well-intentioned people think if they just provide good, accurate information, patients will accept it and act on it.

But that’s not how humans work.

We all come from different experiences and perceptions. That influences how we take in information. How we act on information. There are barriers to activation and confidence and action. Emotional barriers. Trust barriers. Communication barriers.

Jud’s work is about building those bridges.

“I think there’s a lot of people in the cancer world, the oncology world, whether they be healthcare providers or pharma or other stakeholders that believe if they just provide good, accurate information to patients, patients will accept it and make it happen. And we know that’s not true. And so that pertains directly to my own personal advocacy is trying to build those bridges so that we get to more patient trust. Not blind trust, but informed trust and good health, both physical and emotional health.”

The Thing Nobody Knew

Jud comes off as polished. Competent. Confident.

But for a long time, he was actually very insecure.

A lot of that confidence was performance. His self-worth came from performing well. From being the guy who had it all figured out.

And then cancer happened.

And advocacy happened.

And somewhere in that process, he discovered that he had value just for being himself. Not for performing. Not for looking like he had it all together.

“It’s kind of exciting that I feel like my cancer advocacy is kind of an outgrowth from that understanding,” he says. “So kind of a later in life understanding.”

That’s the real transformation. Not from sick person to survivor. But from performing competence to actually being comfortable in his own skin.

What He Wants to Build

If Jud had unlimited time, money, and resources, what would he do?

Two things.

First, more funding for early stage cancer research and translational research.

“I worry about the direction we’re going as it relates to the innovation and the creation of new approaches and pathways towards more effective and less toxic cancer treatments,” he says. “We have a lot of really great stuff that’s in the pipeline now, but that was due to the early stage work that was done 10, 15, 20 plus years ago. And I worry that when we’re 10, 15, 20 years from now, we won’t have some opportunities because of the current state of the world.”

Second, he wants people to understand that we all come from different experiences and perceptions. That we need to build bridges of understanding and trust. That providing information alone isn’t enough.

We need connection.

Favorite Things

Blue is Jud’s favorite color.

Bruce Springsteen is his musician. He’s got eclectic taste. Jazz. New wave from the 1980s. Classic rock. But Springsteen is at the top.

Japan is where he wants to go. It’s his bucket list place. Japanese culture. Japanese food. And now, because of his advocacy work, he’s speaking at the World Theranostics Conference in Osaka next March. His cancer work is literally taking him there.

And the thing most people don’t know about him is that he was insecure for a long time. Performing competence. Now he’s found comfort in being himself.

Connect With Jud

You can find Jud’s work in several places:

Website: NENfolk.org (currently in development) His new clearing house for quality information on neuroendocrine cancer and radiotheranostics. Also has information about his advocacy work.

Facebook: Neuroendocrine Cancer Event Hub A group with a calendar of upcoming neuroendocrine cancer patient educational events and opportunities, both online and in person.

Work: ECOG Akron Cancer Research Group patient advocacy committee, speaking engagements with pharma and industry groups.

You can contact him through either the website or Facebook group.

Final Thoughts

Jud Kimmel was a finance guy who had a clinical trial, a diagnosis, and a strange collection of symptoms that nobody could quite explain.

He became someone who bridges the gap between patients and the people who develop treatments. Between fear and understanding. Between performance and authenticity.

He’s not a scientist. He’s not a doctor. He’s not someone who looks like he belongs in the cancer research world.

But maybe that’s exactly who we need. Someone who remembers what it’s like to be confused and scared. Someone who can translate complex science into human understanding. Someone who knows that we can’t just give people information and expect them to act on it. We have to build trust first.

That’s what Jud is doing. One conversation at a time. One Novartis meeting at a time. One Facebook group event at a time.

Building bridges where fear and understanding can meet.

If you’re facing a neuroendocrine cancer diagnosis, or if you’ve been told about radiotheranostics and you’re scared or confused, Jud’s resources are there for you. NENfolk.org is coming. The Facebook group is active. The information is designed to help you understand, not to push you in any direction.

Just to help you trust that you’re making an informed decision.

Every week I sit down to write this and feel the same thing: gratitude. Not the performative kind, the kind that comes from watching people do hard, unglamorous, important work and choose to keep doing it anyway. This week’s three advocates are each pulling on a different thread of what it means to make healthcare more human. One is connecting dots at a major European conference. One is making the case that rare disease patients deserve the same storytelling power as anyone else. And one is arguing that lived clinical experience isn’t just nice to have in policy rooms, it’s essential. Let’s get into it.

Katell Maguet | LinkedIn

Katell is a researcher, patient advocate, EUPATI fellow, and speaker, and she has a gift for finding the through-line in a conversation that everyone else is having in parallel. At EUPATI’s Annual General Meeting, she did exactly that. Two threads were running through the conference: patients as partners from the very beginning of research, and moving research beyond tokenism. Katell connected them. Her argument was clear and worth sitting with: real co-ownership doesn’t start when patients are invited to review a protocol or comment on a consent form. It starts with the first kind of involvement, the earliest, most foundational moments of a project. That’s not a small distinction. It’s the whole ballgame. When patients are brought in late, the structure is already built around assumptions that may not reflect their reality. Katell is one of those advocates who makes the field smarter just by asking the right question at the right moment. Follow her work, she’s consistently worth your attention.

Jessica Baladad | LinkedIn

Jessica works at the intersection of storytelling and rare disease, and she has a way of turning a single human moment into a full-blown policy argument, without losing any of the humanity along the way. The moment that sparked this particular post? She met a woman who had been told to eat cat litter to manage her hypoparathyroidism. Read that sentence again. That’s the reality some rare disease patients are navigating, not because their doctors don’t care, but because the knowledge infrastructure, the community, the decades of hard-won advocacy simply isn’t there yet for every condition. Jessica’s point is this: patients with more “privileged” diagnoses — her word, and it’s the right one — have had generations of advocates building the tools, the language, the story frameworks that help patients understand and own their experience. Rare disease patients deserve the same. Not charity. Not awareness months. Command. Jessica is doing the work of building that. Pay attention to her.

Sean Powell, MSW, LCSW, CCM, OSW-C | LinkedIn

Sean is a senior social work and case management executive, and he made a point this week that I think more people in advocacy need to hear. Sharing from Moffitt Cancer Center’s government relations team, he made the case for social workers at the policy table — not as translators or support staff, but as full participants whose clinical experience gives advocacy something real to stand on. Here’s the thing: when a social worker walks into a lawmaker’s office, they’re not carrying talking points. They’re carrying hundreds of patient conversations, family crises navigated in hospital hallways, systems failures witnessed up close. That’s not anecdote. That’s evidence. Sean understands that the line between clinical work and policy work isn’t as firm as the org chart suggests, and that the people who’ve sat with patients through the hardest moments have an obligation to bring that into rooms where decisions get made. That’s advocacy. That’s the work.

If you found value in this week’s edition, the best thing you can do is share it with one person who needs to see it. And if you know someone doing quietly extraordinary advocacy work — in any disease space, at any level — nominate them for a future edition at advocacyatwork.com. This community grows one real story at a time.

See you next week.

Her mom was calling to tell her she’d just had a lumpectomy. She had breast cancer.

“That hit me really hard,” Linda tells me. “My mom and I were like besties. I just adored her. And I really wanted her to have told me ahead of time so I could have been the person holding her hand through the surgery.”

But her mom didn’t tell her first. And there’s a reason for that.

This was a time when women didn’t talk about cancer. When getting diagnosed felt like something you’d done wrong. Like it was your fault. Like you should be ashamed. Moms were supposed to be the caretakers, not the person who needed caring for.

So Linda’s mom handled it the way women did back then. Quietly. Alone. Without telling the people she loved most.

Eight Years Later

The cancer came back eight years later.

This time it had metastasized. It was all over her body.

Linda’s mom went through a bone marrow transplant. It was brutal. And it didn’t work.

She died from breast cancer. And the experience was so traumatic for the whole family that Linda made herself a promise right there.

She was going to become an advocate for breast cancer survivors. Because the only real relief her mom found during that entire ordeal was the American Cancer Society. She went to support groups. She modeled the turbans when she lost her hair from chemo. She joined Reach to Recovery. She had a place where she could talk about it freely.

So when Linda graduated from college and became a reporter, she suddenly had a platform. And she knew what to do with it.

A Platform and a Purpose

For the next 30 years, Linda showed up.

She spoke at fundraisers for the American Cancer Society. She modeled in runway shows. She used her growing presence in Tampa Bay to raise awareness and money for breast cancer.

And then, many years later, she got diagnosed with breast cancer herself.

But her diagnosis was different from her mom’s. Because Linda had been advocating for herself in a way her mom never did.

Starting in her 30s, Linda insisted on getting mammograms. Even when doctors said she was too young. Even when insurance companies said they wouldn’t pay. She just found another doctor and argued with the insurance until they agreed.

She was relentless about it. Self-advocacy. Standing up for herself. Not accepting “no.”

And because she’d been getting those mammograms year after year, the radiologist could compare the images. So when a cluster of calcifications showed up, they caught it early.

Stage 0 DCIS. Ductal carcinoma in situ. Just beginning to break out of the duct. It hadn’t even become a full tumor yet.

Dancing With the Devil Once

The doctors told her a lumpectomy would probably be fine. She could get just that one breast treated, and she’d likely be okay.

But Linda remembered something her mom taught her. Even when the cancer came back eight years later for her mom, it was aggressive. It was sneaky. It was ultimately fatal.

“I only want to dance with this devil once,” Linda says. “And I know it’s aggressive and I know it’s extreme. But I’m going to find a doctor who will do a double mastectomy.”

Everyone thought she was crazy. A double mastectomy for stage 0? That was aggressive. That was extreme. Why would you do that?

But Linda had watched her mom. She knew what cancer could do.

She went and found a doctor who would do it. She went to her insurance company with fifteen years of mammogram images showing the progression of the changes in her tissue. She basically said: “Look. You can wait until this becomes full-blown cancer and costs you way more in treatment. Or we can do this now.”

The insurance company agreed to pay for it.

And 15 years ago, Linda had a double mastectomy in her early 40s.

She’s still here. She’s healthy. And her mom’s cancer came back at eight years.

“I really feel like I made the right decision,” she says.

Two Kinds of Advocacy

There’s self-advocacy and then there’s mission-before-self advocacy.

Linda’s learned both.

Self-advocacy is what she teaches women now. Stand up for yourself. Fight for yourself. If you have a gut feeling something’s wrong, find the doctor who will listen. Don’t accept no from anyone. Not doctors. Not insurance companies. Not the system.

“I say women because I think you men tend to maybe not go to the doctor as much as women do. But I do think you don’t have problems speaking up for yourselves and fighting for yourselves,” she says. “It’s more of a problem for women.”

But mission-before-self is different. It’s about putting something bigger than yourself in front of you. Like helping others. And when you do that, two things happen. Number one, it helps you heal. Number two, it takes the spotlight off you and your problems and your pain. And suddenly your life becomes so much more peaceful and gratifying.

“If you put something of bigger importance in front of you like helping others, number one it’s going to help you heal. Number two it takes the spotlight off me, me, me, me, me. And you’ll find that your life becomes so much more peaceful and gratifying when you start putting mission before self.”

Not Saving the World

Linda’s not trying to save the world from cancer. She’s not trying to cure it.

She’s trying to help one woman at a time get a mammogram.

It sounds simple. But it matters.

She has a friend who used to work in TV. She got laid off. Got divorced. Lost her insurance. And she couldn’t afford a mammogram.

She was probably embarrassed to ask Linda for help. But Linda has been raising money through something called Shoot for a Cure, and that money goes directly to the AdventHealth Breast Care Center where she was diagnosed. It pays for mammograms for women who are uninsured or underinsured.

Linda put that into action. Her friend went and got the mammogram. Everything was fine.

Since she started this work, Shoot for a Cure has raised $250,000. That’s 250,000 dollars that’s gone directly to women who couldn’t afford to get screened.

“I’m not going to stroke a check for $500,000,” she says. “But I think this is what I can do. And I can do it one mammogram at a time for one woman who cannot afford it for whatever reason.”

The Woman at Dinner

Fifteen years ago, Linda was at a doctor’s appointment when a woman in the waiting room recognized her.

The woman asked the doctor if she could say hello to Linda. So Linda came out and met her. Listened to her story. Gave her a hug. Gave her some advice.

Fast forward fifteen years.

Linda’s at dinner when a woman approaches her. It’s the same woman from the waiting room all those years ago.

“Thank you,” the woman says. “It made quite an impression on me.”

Linda didn’t remember her. She’s been on the air in Tampa for thirty years. She doesn’t remember everybody she’s touched. But that woman remembered. And Linda’s kindness, Linda’s attention, Linda’s presence in that moment, had stayed with her for fifteen years.

“Again, it goes back to the more you give, the more you get,” Linda says. “How awesome is that, that in a time of her need, I could help her. And not just my friends, but someone I don’t know. And have that kind of impact. That’s really a great thing that I’m truly grateful for.”

The Author

By night, Linda is something completely different.

By day, she’s an anchor at Fox 13. She tells real stories about real people. Stories with consequences. Stories that matter.

By night, she writes thrillers. Under the pen name Linda Bond (her mom’s maiden name).

Her first book came about because she was sitting at the anchor desk reading a story about adventure vacations. Skydiving. Swimming with sharks. Underground cave diving. All inherently dangerous things.

She turned to her co-anchor and said, “What if somebody was using the adventure vacation to kill people? If you died skydiving or swimming with sharks, no one would think it was murder. You’re signing your life away anyway.”

Her co-anchor said, “I would read that book.”

So she wrote Alive at Five.

Her second series is about a serial killer. And the lead protagonist is a reporter in Tampa. Because Linda’s life naturally bleeds into her fiction.

“I’m a storyteller,” she says. “That’s what I am. There’s really very little difference between the two. I just have to get the stories right by day because they’re about real people and they have real life consequences. And at night, I can just make whatever up.”

Five Kids and an Open Heart

Linda didn’t really want kids at first.

She was career-driven. All in on her work. Then she met her husband in her early 30s. He had two kids.

She became a stepmother first. Then she had two biological kids with him. Then they adopted one of his relatives from Cuba.

Five kids total. Not all from the same biology. But all five are hers.

“People when I say that and they look at me, they go, ‘You have five kids,’” she says. “Yes, I do not know that everybody knows that about me.”

And when her daughter is old enough, she becomes a pilot for Delta. Linda and her husband will be able to fly standby for free. When she retires from TV, they want to just show up at the airport with a carry-on, fly first class to wherever there’s an opening, and figure it out once they get there.

Japan. Vietnam. Thailand. Places with cultures so different from the United States. Places that are beautiful.

“It will be such an adventure,” she says.

The Dream That Matters

If money and time and institutional gatekeeping were off the table, what’s the one thing Linda would do?

“I’d like to see there be a cure for cancer,” she says. “And if it’s not a cure, maybe something like insulin was for diabetes. A way maybe to live longer with a treatment that is not so harsh.”

She watched her mom go through a bone marrow transplant. “It was horrid. And then she died anyway.”

But Linda’s been following a local researcher named Dr. Tebby who’s trying to come up with a vaccine for childhood leukemia. What if there was a genetic test that could show a baby was likely to get leukemia? And then they could give them a vaccine to prevent it?

“Wouldn’t that be awesome?” Linda says. “Wouldn’t that be a better way?”

If Linda had $500,000 to give, that’s where it would go. To researchers who are trying to prevent cancer or treat it in a way that doesn’t almost kill you in the process.

Favorite Things

Hot pink is Linda’s favorite color. Her whole closet is full of it. Because pink is for breast cancer. And hot pink makes a statement.

Her co-anchors at Fox 13 make fun of her because she wears it constantly. But she doesn’t care. Hot pink is her color.

Eighty’s rock and roll is her soundtrack. Bon Jovi. Guns N’ Roses. Queen. That whole era. When you turn on music in Linda’s car, it’s probably an 80s playlist.

Her bucket list includes Japan and Vietnam and Thailand. Places that feel different. Places with different cultures.

And one thing most people don’t know about her is that she came to motherhood in a non-traditional way. Stepmother. Adoptive mother. Biological mother. All five kids are hers in the way that matters most.

Connect With Linda

You can find Linda in two very different places:

On TV and Social Media:

• Fox 13 Tampa Bay news anchor

• Find her at Fox 13’s Linda Hurtado on all social media platforms

• 30 years of anchoring the news in Tampa Bay

As an Author:

• Author Linda Bond on social media

• lindabond.com for her thriller novels

• Her books Alive at Five and the serial killer series

She’s also very involved with:

• American Cancer Society

• Shoot for the Cure

• AdventHealth Breast Care Center

• 1 Voice Foundation

Final Thoughts

Linda’s story teaches something really important. The trauma that happened to her mom didn’t have to repeat.

It could have. The cancer could have come back for Linda too. The aggressive double mastectomy could have been seen as overkill.

But it wasn’t. Because Linda listened to her body. Because she advocated for herself. Because she didn’t accept no from anyone. And because she trusted her gut about what that aggressive cancer could do.

Thirty years later, she’s still here. She’s still on the news. She’s still writing thrillers. She’s still raising money for mammograms for women who can’t afford them. She’s still sitting down with women who need to hear that they matter. That their lives matter. That they’re not alone.

“The more you give, the more you get,” Linda says.

That’s not just advocacy. That’s a life lived with purpose.

If you’ve had breast cancer, or you love someone who has, Linda’s work is still happening. She’s still showing up. Still advocating. Still using her platform to help women get screened, get treated, get heard.

And if you haven’t had your mammogram this year, maybe Linda’s story is your reminder. Stand up for yourself. Don’t accept no. Your life depends on it.

Every week I put together this roundup because I genuinely believe the people doing this work deserve to be seen. Not as statistics. Not as case studies. As people who woke up one day, usually on the worst day of their lives, and decided to turn it into something. This week’s three advocates are doing exactly that — in conference rooms, on Capitol Hill, and across social media — and I want you to know their names.

Matt Paradise | LinkedIn

Matt has been named the Patient Keynote Speaker at the TargetCancer Foundation’s 5th Annual Think Tank on Advancing Precision Medicine in Rare Cancers, happening November 12. His talk is called “The Life Inside the Science,” and that title alone tells you everything about why he belongs in that room.

Here’s the thing about rare cancer spaces: they can get very clinical, very fast. And that’s not a criticism, the science matters enormously. But Matt is walking into that room to remind everyone present that behind every data point is a person who waited for a phone call, who sat in a car outside a clinic too scared to go in, who had to explain a diagnosis to someone they love using words they’d only learned a week earlier. His talk is rooted in his own rare cancer experience, and he’s making the case that patients don’t experience cancer as science alone. The fear, the uncertainty, the relationships, the impossible decisions — all of it is happening alongside the science, not separate from it. That’s the perspective a room full of researchers and clinicians needs to hear, and Matt is the one delivering it. I can’t wait to follow how this lands.

Jeanelle Adams | LinkedIn

Jeanelle Adams is a triple-negative breast cancer survivor, a current clinical trial participant, and a policy advocate from Newark, New Jersey, and last week she was one of more than 750 cancer advocates who showed up on Capitol Hill for ACS CAN’s Cancer Lobby Day.

She went there to push for increased cancer research funding and the bipartisan Clinical Trial Modernization Act, and she didn’t just go with a talking point. She went with a framework. Her framing is that stories matter, but they have to lead somewhere. And she carried more than her own story, she carried the voices of patients, caregivers, and underserved communities who face the practical, unglamorous barriers that keep people out of trials: transportation, lodging, the cost of treatment-related expenses that no one budgets for. These aren’t small obstacles. They are the reason clinical trials have a diversity problem. Jeanelle understands that, and she’s making sure the people with the power to change it understand it too. She’s exactly the kind of advocate who makes Lobby Day worth having, someone who shows up knowing what she’s asking for and why it matters beyond herself.

Wenora Johnson | LinkedIn

Wenora Johnson was featured as Day 20 of the Social Health Network’s #50DaysOfSocialHealth, and if you don’t already know her work, this is your introduction.

Wenora is a Lynch syndrome advocate and cancer research patient advocate leader who has spent years doing the slow, unglamorous work of turning lived experience into structural change. The line she’s known for, that patients shouldn’t just have a seat at the table, they should have a voice in building it, is the kind of thing that sounds quotable until you realize she’s actually living it out. There’s a difference between being invited into a room and having a say in how the room is designed. Wenora is fighting for the second thing. The recognition came through Julie Croner and the Social Health Network, and in typical Wenora fashion, she pointed straight back outward, talking about the ripple effect of people sharing their stories and what it makes possible. That instinct, to celebrate the community rather than just the moment, is what makes her the kind of leader other advocates want to follow.

If one of these three sparked something for you, go follow them. Leave them a comment. Tell them Tim sent you.

And if you know someone doing work like this — a patient advocate, a caregiver advocate, a community builder quietly changing things from the inside — nominate them for a future edition. You can reach me at advocacyatwork.com or comment below. I read every one.

If you’re not subscribed yet, now’s a good time. This roundup goes out every week, and the people in it are worth your attention.

Welcome to Advocacy at Work. I’m Tim McDonald, the host of this publication and podcast.

Here, you’ll find conversations with patients, survivors, caregivers, advocates, and healthcare leaders about how lived experience becomes meaningful action—and what others can learn from it.

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Why this work matters

Advocacy at Work began with a belief that guides every conversation here: the wound becomes the wisdom, and the wisdom becomes the work.

A diagnosis. A loss. A caregiving journey. An experience of being overlooked by the healthcare system.

These moments can change a person’s life. They can also become the beginning of work that supports others, improves access, changes policy, builds community, or makes healthcare more human.

The purpose is not simply to tell patient stories. It is to learn from them—and to ask what changes when lived experience is treated as expertise.

Find your place here

If an experience changed your life and you are looking for connection or a path toward advocacy, you belong here.

If your work affects patients and communities, you belong here too—with a willingness to listen, learn, and act on what you hear.

Our conversations bring patient and caregiver perspectives together with the work of advocates, healthcare teams, researchers, professional organizations, and mission-aligned partners.

The people closest to the experience remain at the center.

Begin with these conversations

There is no single starting point for advocacy. These three conversations explore finding your community, speaking up for yourself, and building organizations that help people create change.

Finding your people—and becoming a leader

The Only Young Person Here
Vanessa Ghigliotty · July 16, 2026

Diagnosed with stage 4 colon cancer at 28, Vanessa describes the isolation of being a young adult in spaces that did not reflect her experience. Her conversation explores how finding peers, building relationships, and showing up consistently became the foundation of her advocacy.

Start here if you are looking for your place in advocacy—or want to understand how belonging can help people become leaders.

Learning to speak up for yourself

The Discipline That Almost Killed Him
Dr. Lawrence Henry · August 20, 2026

A retired Green Beret reflects on how a mission-first mindset shaped his response to symptoms, treatment, and asking for help. His story explores the balance between trusting a care team and making sure your own concerns are heard.

Start here if you have struggled to ask for help—or work with people who have learned to put their own needs last.

Building pathways from stories to action

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

How does an organization help people move from sharing their experiences to influencing policy and research? Anjee discusses Fight CRC’s approach to developing advocates, sustaining long-term work, and protecting its mission while seeking funding.

Start here if you are building an advocacy program—or looking for different ways to contribute.

Stay connected

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Prefer to watch or listen? You can also find Advocacy at Work on YouTube, Apple Podcasts, and Spotify. Follow me on LinkedIn for additional reflections and conversations.

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He was working in AI. Fortune 500 companies. Helping healthcare organizations rethink how they work. Staying on top of an emerging field that was changing everything.

He was a previous triathlete. Healthy. Active. Playing with his kids. No sense of what was coming.

Then in June 2024, he ended up in the neurology ward at UCLA Ronald Reagan with a brain bleed.

He didn’t go to the hospital expecting a brain bleed. He certainly didn’t go expecting what came next.

The Double Hit

While John was recovering from the brain bleed, the cardiologists came in.

They’d heard a murmur on his scan. They’d seen it. A bicuspid aortic valve. The doctors said some people live their entire lives like this. Others need surgery.

But the news hit him and his wife hardest because they were already reeling. They were vulnerable. They’d just gotten news about a brain bleed. Now this.

“It was like a bang, bang, double hit,” John says. “It was an incredible hit to take for my wife and myself, and having to keep that in and not tell my children and too many until we really knew what was happening.”

They got back to the East Coast and started meeting with cardiologists almost immediately.

Further tests revealed it wasn’t just a bicuspid valve. He had severe regurgitation, a leaky aortic valve. And an aneurysm measuring significantly wide.

The window was initially two to ten years. How do you live your life knowing major surgery could be coming? How do you function with that hanging over your head?

Then the tests came back clearer.

The window shrank. From years to weeks. To a month.

Game on pretty quick at that point.

The Blessing of Time (And Choice)

John was very blessed to have great insurance and the ability to meet with surgeons quickly.

But more than that, he had a choice. Which type of procedure. Which surgeon. Which approach. He could see who he felt most comfortable with and choose the path forward.

Many people don’t get that. Many people get emergency situations with no planning time. Chaos. Panic. Everything happening at once.

John had time to worry. Time to process. Time to think about what was coming.

“I’ve since met with many patients who have been through cardiac procedures,” he says. “Some faced emergency situations with no planning time. Others had the time to plan like I did. Both are rough in different ways.”

But John made a choice in that time. A choice to lean into his strengths.

AI as a Companion

John works in AI. He’s spent years helping healthcare organizations transform with artificial intelligence.

But now he was a patient facing open heart surgery.

And he realized something. He could use all that expertise on himself.

He could take his clinical narrative. Everything about his diagnosis. All the test results. The options. Open heart surgery. Sparing his own valve. Replacing it with a mechanical valve. The recovery process.

All of it.

And he could turn it into something his children could understand.

His daughter was nine years old.

She was obsessed with Taylor Swift.

So John took his entire clinical narrative and fed it into AI with one request: explain this through Taylor Swift lyrics and trivia.

“It was truly like magic,” he says.

AI took the complexity of open heart surgery and reduced it to the context his nine-year-old could understand. Songs she loved. Lyrics that matched his journey. A way to explain what was happening to daddy’s heart that didn’t sound like a medical textbook.

His wife and John looked at each other. “Gosh, this is it. You’ve got to make a song for her.”

So he did. He directed it. ChatGPT composed it and wrote it. Another AI tool handled the music production. And John gave his daughter a song that explained her father’s surgery in her language.

He did the same thing with his son using basketball mechanics. Complex medical reality translated into the language of the game he loved.

“I realized that we are at the emergence of a time where we can take complex, turn it into clarity through the context that a person can truly understand and relate to,” John says. “And I don’t think we’ve ever been able to do that before.”

AI as a Second Voice, Not a Second Opinion

There’s a distinction John is careful to make.

AI can be powerful as a second voice. A companion. Something to help you think through things. Something to help you ask better questions.

But AI cannot give you a clinical diagnosis. Cannot give you a definitive on what something is or what it isn’t.

And it can never put a hand on your shoulder. Can never give you the gentle voice of a family member. Can never give you the expert bedside manner of a clinician.

“The most powerful use of AI,” John says, “is at 2:00 AM before open heart surgery when anxiety is highest and the hospital’s asleep. When you don’t want to go down a Google rabbit hole or read information in a booklet. When you want answers that are context-relevant to your situation.”

That’s when AI shines. When you can ask the same question 38 different ways without feeling embarrassed. When you can get clarity without having to wait for someone else to wake up.

But here’s the thing. Most people use AI as a second opinion. John uses it as a second voice.

A second opinion is something that should come from a licensed clinician. A second voice might tell you there are other alternatives. Might there be other research? Other clinical trials? All the what-if questions you didn't get to ask in that highly emotional consult with a surgeon.

Because when you’re sitting across from a surgeon, you’re so worried and panicked that you don’t retain anything. You forget all your questions. You’re just trying to process the overwhelming.

But afterward, when you have time and AI at 2:00 AM, you can think through things differently.

The Moment Everything Changed

John’s care team came into his room at Cleveland Clinic.

They’d already done one open heart surgery. His sternum was being held together by wires, plates, and screws.

Now they needed to go back in. Twenty days after the first surgery. Before the first surgery had even healed.

“Our whole world fell apart,” John says.

But in that moment, something shifted for him too.

He realized this wasn’t just something happening to him. This was something that happened for a reason.

He was meant to shine a light on the patient journey. He was meant to combine his knowledge of healthcare and innovation and AI and patient experience. He was born to tell that story and do something with that moment.

“I felt that I need to do something and raise more awareness of this so that patients coming after me can get a glimpse into the types of tools that could help them and their families in some way navigate such a difficult experience,” he says.

He wanted to thank the people who made YouTube videos about open heart surgery that helped him so much. And he wanted to give back for those coming after him.

The Future Patient

John’s launching a book called The Future Patient.

It comes out September 29.

The book is his journey through leveraging AI and his wife’s love and support to get through back-to-back open heart surgeries. It’s his behind-the-scenes view of what it takes to get through complex procedures when things go bumpy.

And throughout the book are QR codes. Scan them and you’ll see behind-the-scenes recordings John and his wife made from the ICU right through to recovery and coming home. A glance all the way through.

He’s also hosting a launch event in New York City to think about the future of care. Patients. Clinicians. Innovators all in the room talking about what does it mean to leverage these tools. How do we get these tools into patients’ hands for any type of complex condition.

His Vision

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

A digital twin.

A companion for every single person that would be a digital version of their human genome. Their entire medical history. Everything that makes up who they are biologically.

“Think of digital twin,” John says. “I feel the next evolution of care is not going to be how to plan recovery. It’s going to be how to predict recovery. Knowing exactly the impact a surgery or a medicine or eating a piece of food is going to have on your body and your longevity.”

Imagine knowing exactly what effect a life choice would have on your health before you made it. Imagine having personalized predictive medicine based on your entire genetic makeup.

That’s the future John sees.

Favorite Things

Fluorescent yellow is John’s favorite color. He’s the first person to say that in all of the episodes.

David Bowie is his musician. He’s got an old soul when it comes to music. Born in England, raised in Australia, and always drawn to the English bands.

Colombia is the place he wants to visit most. His wife is Colombian, speaks fluent Spanish. Their kids are learning Spanish. They haven’t been as a family yet to chase her family’s roots. But that’s changing next year. He made a commitment to his son.

Australia is always in his heart. His family’s there. They go a lot. But in terms of a tropical destination, the Maldives.

And one thing most people don’t know about him: twenty years ago, he nearly died paragliding in Austria. The chute didn’t open, got stuck in his arms, they crashed into the side of a mountain and had to be rescued by helicopter.

He also swam from Alcatraz back to San Francisco twice during his triathlon days. Stories for the grandkids.

Connect With John

Everything John’s working on is at thefuturepatient.com

That’s where you’ll find:

• The Future Patient book (launches September 29)

• Launch event details for New York City (thinking about the future of care and patient experience)

• His AI transformation and adoption consultancy services:

  https://thesignaltwo.com/

The book has QR codes throughout for behind-the-scenes recordings from his ICU recovery.

You can follow his work and stay connected through his website.

Final Thoughts

John Duffield was an AI expert who could speak intelligently about the future of healthcare. But he didn’t need to imagine what it would be like to go through a complex medical crisis. He lived it.

And in that crisis, he did something remarkable. He didn’t just survive it. He turned his professional expertise into something that could help his family survive it too.

He created songs and basketball plays and explanations that made sense to the people he loved most. He used AI not as a replacement for human care, but as a companion when human care wasn’t available.

And now he’s writing about it. Speaking about it. Building on it.

Because the next patient who gets told they need open heart surgery, the next family that has to sit with that news and figure out how to tell their kids, maybe they’ll read John’s story.

Maybe they’ll think about AI as a second voice instead of a second opinion.

Maybe they’ll realize that using every tool at your disposal, even the ones from your day job, isn’t giving up on human connection. It’s expanding what human connection can mean.

That’s advocacy. That’s turning your crisis into a map for the people coming after you.

Before you go, I want to pass something along.

John Duffield, is a two-time open-heart surgery survivor who leaned on AI to get through the hardest stretch of his life. He used it to understand his own diagnosis, to walk into surgery with the right questions, even to explain what was happening to his young daughter in a way she could hold onto. Now he’s building something for patients on that same road, and he’s looking for clinicians to be part of it.

If you’re a surgeon, a cardiologist, or an oncologist based in NYC, or you know one who cares about the patient on the other side of the chart, this is worth your time. It’s invitation-based. You can request one here: https://thefuturepatient.com/invite/

Share it with anyone who should be in the room. That’s how this work moves.

Because sometimes the best tools for navigating your crisis aren’t medical. They’re the ones that help you make sense of the medical.

And sometimes those tools come from the most unexpected places.

Every week I sit down to write this and I think about the same thing: advocacy is not a job title. It is a posture. It is how you show up, who you make room for, and whether you are willing to do the slow, unglamorous work of building trust with people the system has already failed. This week three people reminded me of that in three very different ways. Pull up their profiles. Follow their work. And if you know someone who deserves to be in this space next week, nominate them at the bottom.

Melissa Buffalo LinkedIn

Melissa Buffalo, CEO of the American Indian Cancer Foundation, said something this week that I have not been able to shake: culture is prevention. Read that again. Not culture as a nice add-on to the real work. Culture as the foundation of it. She frames cancer not as a discrete event but as a continuous journey — prevention, screening, treatment, survivorship, healing — all connected, all deserving of care. And she talks honestly about walking alongside people through every part of that journey, including loss.

What stayed with me most was what she said about trust. When Native people feel seen, heard, and respected, they show up for screening. They come back for follow-up. They stay connected to care. That is not a small thing. That is the entire ballgame. Too much of the healthcare system is still asking people to come meet it where it is, to fit themselves into structures that were never built with them in mind. Melissa is doing the opposite, and the difference between those two approaches is the difference between health equity as a talking point and health equity as something real.

Danielle Ripley-Burgess LinkedIn

Danielle Ripley-Burgess, COO of GI Cancers Alliance, has been posting all week from VOICE London, and if you have not been following along, go back and read the whole thread. She went deep — colorectal cancer clinical trials, biomarkers, liquid biopsies, the PRESSURE Consortium doing cross-European work on esophageal cancer. This was not surface-level conference content. She was in the room for the hard science conversations and she brought us with her.

One thing she shared has been sitting with me: the NHS mails a FIT test to every person in the UK when they turn 50. Every single one. No phone call to make, no appointment to schedule, no system to navigate. It just arrives. Imagine what our screening numbers could look like if we made it that easy. This is exactly why it matters for advocates to go deep on the science. The more we understand, the harder it is to talk past us. The more we know, the better the questions we bring into rooms where decisions are being made. Danielle is a model for what that looks like.

Matt Toresco LinkedIn

Matt Toresco used his platform this week to do the exact thing he was talking about. He did not just discuss amplification — he amplified someone. He shared a conversation with Bridget Dandaraw-Seritt, and her words are the ones I want to close on: don’t get in the way, amplify their voices.

There is a version of patient advocacy where organizations invite patients to the table but still run the meeting. Where patients are consulted but not really heard. Where the work gets done around them rather than with them. Bridget named that dynamic clearly, and Matt gave her the space to do it. His closing question is one worth sitting with long after the post scrolls out of view: what would change if more organizations treated patients as partners and leaders instead of guests at the table? I think the honest answer is: almost everything. That is why this work matters. That is why people like Matt matter.

If this issue connected with you, please subscribe and share it with someone in your orbit who is doing this work. And if you know an advocate — a patient, a caregiver, a community builder, anyone doing real work in real communities — nominate them for next week. Comment below or reach out at advocacyatwork.com. This newsletter exists because of the people in it, and there are so many more stories worth telling.

Yann Bizien was living a standard life in Paris in 2017. Software industry. Account manager. Selling solutions to enterprise. A four-year-old daughter. Pretty much standard health. He wasn’t the kind of guy who went to doctors. He did a little bit of sports. He had a healthy life.

Then came the stomach acidity. It increased. And one day he couldn’t eat anymore.

In 2017, at age 35, the diagnosis came back: stage 4 pancreatic cancer.

“Even the word cancer was not possible to associate this with my life,” he tells me. “It was a shock.”

Most people don’t know much about pancreatic cancer. Most people who get it don’t survive it. Five-year survival rates hover around 11 percent. Stage 4 is essentially a death sentence.

Yann’s doctors never talked about being cured. They talked about managing the disease. They talked about hoping. They didn’t talk about recovery.

The Long Road

What Yann didn’t know when he started his chemotherapy was that he would end up taking more than a hundred cycles of it.

He stayed in the hospital for more than five years.

The drug was FOLFIRINOX. If you know anything about cancer treatment, you know this name. It’s one of the most brutal, most toxic chemotherapy regimens out there. It destroys your body in order to save your life. Or tries to.

He was so tired. So much nausea. So much being sick that he’d spend whole days after chemotherapy in his bedroom doing nothing, conscious of being useless. That’s the hardest part when you’re a young father. You can’t play. You can’t be dynamic. You can’t be the person you were.

Two weeks between cycles. First week awful. Second week starting to feel better. Then back to the hospital.

But something was working. After six rounds, the doctors did their blood tests and scans. They couldn’t even measure how many cancer cells he had anymore. They’d gone so low the tests couldn’t detect them.

“I remember I took an Excel file and said, ‘Okay, so it’s decreasing each time. It’s so encouraging. I think in six months I will be here,’” he says.

He charted his cancer markers like a data scientist tracking a project. Because even in the middle of his disease, he had to believe in something. He had to have a goal.

The Family Project

At some point early in his treatment, his oncologist said something that changed his perspective.

“Yann, we’re going to preserve your fertility in case you want to have another child. Don’t think about it yet. But we’re doing it first. Then if you have the possibility, you can think about it.”

Most people in his situation would have thought: I might not survive. Why would I have another child?

Yann thought: I’m confident I’ll beat this. And I always wanted a second child.

So he said yes.

More than three years after his diagnosis, his second daughter was born in 2020.

“This is one benefit from cancer,” he says, “even if it’s a kind of special life.”

The Relapse

In late 2021, more than four years after his diagnosis, Yann felt pain. Not specific pain. But close to where the pancreatic tumor had been.

He was afraid. He talked to his oncologist immediately.

“Don’t worry. Probably nothing. We’ll wait and see how it evolves,” they said.

It evolved badly.

His cancer markers started going up again. And when they finally did a PET scan, the diagnosis came back: relapse.

“It was devastating,” he says. “I had the sensation of losing four years of treatment and tough treatment. And now we have to go back.”

He went back on FOLFIRINOX. He already knew what it would do to him. He already knew the pain, the exhaustion, the weight loss.

But this time, his oncology team had a different idea. They talked about a surgeon. They wanted him to see a specialist.

Yann was confused. The doctors had always told him he wasn’t eligible for surgery. Surgery was for early-stage patients. Stage 1, maybe stage 2. Not stage 4. Never stage 4.

The Surgeon’s Different Story

But the surgeon had a completely different perspective.

“You’re young,” the surgeon said. “And I’m looking at your history. Yes, you had a relapse. But when I look at your metastasis in the liver, it hasn’t moved for years. That suggests these probably aren’t cancer cells. If we look at your whole medical history, you might not actually be stage 4 anymore.”

This was the first time anyone had suggested such a thing.

“And since you’re a very good responder to chemotherapy,” the surgeon continued, “and you’re young, the Whipple surgery might be your only shot at a cure. You have to take it.”

For Yann, it was like someone had given him permission to hope again.

He did six more rounds of chemotherapy to shrink the tumors. Then, in summer 2022, he went into surgery.

He was calm. He knew he was in good hands. They opened him up and found a metastasis he hadn’t seen on the scans. It was an emergency moment. They rushed it for analysis.

It wasn’t cancer.

So they proceeded with the Whipple. They removed the head of his pancreas. They removed part of his stomach, his duodenum, his gallbladder. They reconstructed what was left.

“Removing the head of the pancreas is not a big deal,” he says. “But the reconstruction of all that is a big deal.”

The Recovery

The recovery was brutal. He came home in June 2022. Very difficult. Digestion troubles. He stayed in the restroom two hours losing consciousness. Some days that summer he couldn’t even walk 200 meters without thinking he would fall.

He called the hospital. “Is this normal?”

“Unfortunately,” they said, “you have to let time go. Be patient.”

But day after day, week after week, month after month, everything changed. His weight went up. His strength came back. Climbing the stairs got easier.

And at the end of his chemotherapy after surgery, they gave him the news he’d been waiting for: it was the end of treatment.

“It was the end of treatment. A very, very good news for me. It was Christmas time. A very nice Christmas gift. It was amazing. I was so happy to have this new life.”

The Opportunity

By 2024, Yann was seven years out from his diagnosis. He was thinking about going back to work. Maybe starting new projects. Focusing on staying healthy, on his family, on consolidation.

Then his oncologist called. “Yann, we have another news for you. There’s a company, a French biotech company. They’re leading a study about cancer survivors. Stage 4 pancreatic cancer survivors specifically. We don’t have so many. But you are one of them. Are you interested?”

The company was Cure 51. Their idea was radical.

Most of the time, when pharmaceutical companies develop new treatments, they study what failed. They study people who died from cancer. They learn from deaths.

Cure 51 wanted to do something different. They wanted to study people who survived. They wanted to look at the biology, the immune systems, the genetics of outliers like Yann.

If you survived stage 4 pancreatic cancer, something in your body is working. Something is protecting you. What is it?

“Oh wow, they’re doing this? Is this real?” Yann said when he heard about it.

He went to their website that same day. Cure 51. Until All Survive. They were raising money. They were in Paris, not somewhere on the other side of the world.

“If I can help even one person in the world with my biology,” he said, “with all the data that I have, please take it.”

The New Mission

When Yann got the call from the co-founders, Nicola and Simon, something clicked.

He’d been thinking about going back to work. But he couldn’t find anything with real meaning. This felt like the opportunity. Like the surgery. Like the kind of chance you have to take.

He called them. “Hey guys, I’m Yann. This is my story.”

“Oh wow. We love your story. We don’t have so many chances to meet survivors in person. Come to the office. Let’s have a meeting.”

They had just started a patient committee. They wanted to know how to involve patients in the biological project, in the clinical study. Yann had the background. He had the lived experience. He could help.

By the end of 2024, he started working with Cure 51, one to two days a week. Not 100 percent of his time. He needed to be careful with his health. But progressively helping them build something new.

“Every day I wake up, my goal is: how can I help in cancer research?” he says. “I’m bringing that patient perspective and bringing that message of hope that we have, which is so powerful.”

The Message

When Yann tells his story to people, it lands differently than the typical cancer narrative.

Just this morning, a French woman contacted him to get help and hope through the story she’d read somewhere.

That’s why he does this. Because recently diagnosed people need to know survival is possible. But so do their families. Their friends. Everyone around them.

So within Cure 51, Yann helps lead two specific missions.

First: amplify the message of hope. Whatever they can do. Social media. Podcasts. Interviewing other survivors. Speaking at conferences about patient experience.

Second: bridge the gap between researchers and patients. Because there’s a gap. Researchers and patients could work together. They don’t. But they could. And Yann helps find those opportunities.

On his definition of advocacy: “Anything that you can do as a person that helps the cancer fight. It could be very large. It goes from raising awareness for all the cancers. Anything that can help. Because there are lots of topics. But anything that helps.”

The Question That Matters

I ask Yann: if money, time, and institutional gatekeeping were off the table, what would he do right now?

“I think I would expand this process of studying super survivors to all disease across the globe. Not just pancreatic cancer. Not just glioblastoma or lung cancer. But look at how we can find new targets, find new revolutionary therapeutics through the lens of the people who survived.”

That’s the insight. The people who lived. Not the people who died. The outliers. The ones where something in the biology said yes instead of no.

Connect With Yann and Cure 51

If you want to learn more about what Yann and Cure 51 are doing:

• Website about the study

• Website for survivors and newly diagnosed: untilallsurvive.com

• Social media: Instagram and Facebook @Cure51

• Contact: You can reach out through either website, and Yann personally answers 100% of requests

They want to hear from you. If you’re a cancer survivor, if you’re newly diagnosed, if you want to support the project. There are many ways to be part of this.

Final Thoughts

Stage 4 pancreatic cancer is supposed to be a death sentence.

Yann Bizien is proof that statistics are not prophecy. That biology is not destiny. That somewhere in the difference between the person who dies and the person who survives is a clue. A secret. Something worth studying.

Most cancer research looks backward. What went wrong? What killed them?

Yann and Cure 51 are looking forward. What went right? What saved them?

Because if you can understand the people who survived, maybe you can make more survivors.

Seven years out from his diagnosis, Yann is healthier than he’s been in years. He’s working on a project that matters. He’s helping other cancer patients find hope. He’s a father. He’s living a new life.

And he’s doing it while knowing that every part of his biology, every detail of his treatment, every moment of his survival is now part of the research that might save the next person who gets that devastating diagnosis.

That’s advocacy. That’s hope. That’s what Until All Survive means.

If you’re a pancreatic cancer survivor, or a survivor of glioblastoma or lung cancer, your story might be the key to unlocking something important. Reach out to Cure 51. Share your data. Be part of the study. Because you survived for a reason. And now science wants to know why.

There’s a version of advocacy that looks polished from the outside — the keynote, the press release, the perfectly lit headshot. That’s not what I’m here to celebrate. What I pay attention to is the messy, honest, keep-going-anyway kind. The person who admits the doubt and shows up regardless. The survivor who turns six hard years into a microphone at their first-ever walk. The author who writes the book and then gets on a bike. That’s this week. That’s Vol. 14.

Claudia Perez-Favela

Here’s the thing Claudia did that I think most advocates won’t do: she said the quiet part out loud. Impostor syndrome is still in her way. She named it. On LinkedIn, publicly, in the middle of a post about graduating from the Latino Cancer Patient Advocate Training Program. I’ve been doing this for seventeen years and I still feel that pull, the voice that wonders if you’re really supposed to be in the room. What Claudia understands, maybe better than she realizes, is that naming it doesn’t make it go away. It just means you stop letting it make decisions for you. She graduated. She’s bringing her voice to a community that is underserved and waiting for more people who look and sound like them. And she’s doing it without pretending she has it all figured out. Honestly? That kind of advocacy lands harder. It reaches the person in the back of the room who also doesn’t feel ready. The one who needed to see someone go anyway. Claudia, I’m glad you went anyway.

Pete Wilgoren

Six years is a long time to carry something. Pete Wilgoren had his first TURBT surgery for bladder cancer six years ago this week, and he doesn’t sugarcoat what came after — a second surgery, three years of treatment, and a disease he describes honestly as one that loves to come back. He could have spent this anniversary quietly. Instead, he stood up and spoke at the very first Walk to End Bladder Cancer in Los Angeles. I think about that a lot, the way some people take the fear they know best and point it outward, toward whoever’s walking the road behind them. That’s not a small thing. That’s actually the whole point of advocacy, when you strip everything else away. You’ve been through it. You know what it feels like in your chest when you don’t know what’s coming next. And so you show up for the person who’s standing where you once stood. Six years ago Pete was the patient. This year he was the voice at the walk. That arc matters.

Kevin Donaghy

I have a soft spot for people who turn their story into something others can hold onto. Kevin Donaghy wrote a book called Stories of Cancer and Hope, which already earns my respect, because writing that book means sitting with a lot of heavy material and believing that sharing it does something worthwhile. But Kevin didn’t stop at the page. This week, he and Tony Collier BEM are riding the Tour de 4 together to raise money and awareness for The Cancer Club. A book and a bike. Words and miles. I love that combination because they’re doing the same thing in different forms: moving the story forward, making it useful, putting it somewhere people can find it when they need it. Advocacy doesn’t have one shape. Sometimes it’s a chapter someone reads alone at 2am. Sometimes it’s showing up in cycling kit and pedaling for the cause. Kevin is doing both, and both count.

If someone in your world is doing the quiet, honest, keep-going work of advocacy — I want to hear about them. Comment below or nominate someone for next week’s issue. And if a friend forwarded this to you and you want it in your inbox every week, subscribe at advocacyatwork.com. See you next Sunday.

She’s an acupuncturist and runs clinical operations at the Virginia University of Integrative Medicine. She speaks with the kind of quiet authority that comes from years of sitting with patients who are terrified, exhausted, and just looking for something that makes them feel like a person again and not just a diagnosis.

We had a lot to talk about.

The moment that changed everything

Haley didn’t come into integrative oncology through a dramatic personal diagnosis. She got there through something subtler. She watched people come back to life in her treatment room.

She described it as watching muted people start to bloom again. Patients who had spent weeks and months white-knuckling their way from one scan to the next, keeping their chins up for their families, staying relentlessly positive until they had nothing left. And then she’d ask them a simple question. What’s going well? Tell me something good. And the lights would come back on.

That shift from disease-focused to person-focused is what pulled her deeper into this work and eventually into a bigger operational and advocacy role. She wanted to scale that moment. She wanted more people to have access to it.

I understand that completely.

The conversation nobody’s having

When I was going through treatment for Stage IV colorectal cancer, I asked my oncology team about complementary care fairly early on. I used acupuncture during treatment and found it genuinely helpful. It helped me manage side effects, sleep better, and feel like my body was still mine in some small way.

But I was also told not to use herbal medicines or certain supplements. For a long time I just accepted that without fully understanding why.

Haley helped me finally make sense of it. The caution isn’t about dismissing alternative medicine. It’s about drug-herb interactions, protecting the clarity of your bloodwork, and making sure nothing interferes with what’s fighting for your life. In my case, with cancer that had spread to my liver, my team needed clean numbers. They couldn’t afford anything muddying the picture.

Her advice to anyone navigating this: get your whole team talking to each other. Your oncologist, your integrative medicine provider, your East Asian medicine doctor. Not siloed. Together. Because the goal is the same on every side of that table. Keep you safe and get you through.

Where acupuncture fits in cancer care

Haley was careful not to overpromise or generalize. She’s a clinician and she knows every case is different. But she laid out a clear framework for where this kind of care can make a real difference.

During treatment, acupuncture can help manage side effects of chemo and radiation, reduce anxiety, and improve sleep. After treatment, it helps patients find their new normal and address long-term effects that sometimes don’t show up until months or years later. Hormone imbalances. Fatigue that won’t quit. That disorienting feeling of not quite living in your own body anymore.

She put it simply. The power that made the body heals the body. Our job is to get out of the way and let it do what it’s built to do.

As someone who takes immunosuppressants derived from plants, I don’t find that hard to believe at all.

Building something bigger

What Haley is most proud of right now is the partnership between VUIM and Life with Cancer in Northern Virginia. For three years, they’ve been bringing acupuncture services to cancer patients and caregivers through the Peterson Life with Cancer facility. Patients who’ve finished their active care at the Schar Center can keep receiving treatments from VUIM clinicians and supervised interns. Caregivers too. Even the doctors, nurses, and staff who show up every day carrying the weight of this work alongside their patients.

There’s also an externship with Memorial Sloan Kettering’s breast center in New Jersey, where students are doing hands-on integrative care at one of the most respected cancer centers in the country.

The testimonials she keeps coming back to are patients talking about something they actually look forward to. Not another appointment. Something that gives them a reason to get up and go.

That’s not a small thing. That’s everything.

If nothing stood in the way

I asked Haley my closing question. If money, time, and institutional gatekeeping were all off the table, what would she build or change first?

Her answer didn’t stay inside medicine.

She wants people to remember they’re human. To recognize how much more alike we are than different. To hold the door open, say thank you, extend a little more grace to the person standing next to them because you have no idea what’s going on inside their body or their head.

She also called out the inner critic. The version of herself that picks apart every decision and second-guesses every move. And she made the case for self-compassion with the same conviction she brings to patient care. Kindness starts inward. So does healing.

I’ve been thinking about that all week.

You can find Dr. Haley Parker and her team at vuimclinic.com. If you’re in Northern Virginia and want to explore integrative care, you can reach the clinic at 703-323-5690. For anyone interested in East Asian medicine as a field of study, check out vuim.edu. Find them on social by searching VUIM Clinic.

If any of this connects with where you are right now, whether you’re in treatment, in survivorship, or supporting someone who is, share this with them. And leave a comment below. I’d love to know if you’ve explored complementary care as part of your own journey.

Until next time.

— Tim

Every week I look for people who are doing the work — not for the spotlight, not for the applause, but because they can’t imagine not doing it. This week’s three advocates are exactly that kind of people. One of them just watched a decade and a half of faith in a single researcher’s lab pay off in the most concrete way possible. One of them walked into a congressman’s office as a college student and reframed the entire conversation around a disease that’s killing people her age at rates nobody seems to be talking about loudly enough. And one of them took colon cancer awareness to the streets, literally, meeting people where they live because that’s the only way health equity actually works. These are the people who keep me going. I hope they do the same for you.

Kyle Noble

Kyle Noble lost his dad to pancreatic cancer in 2014. Then two more family members to the same disease. That kind of loss would break most people — or at least make them look away. Kyle looked straight at it and started riding. This year he completed his 15th Pan-Mass Challenge, raising money for Dr. Brian Wolpin’s lab at Dana-Farber every single year, including the years when hope in pancreatic cancer research meant believing in something that hadn’t proven itself yet. He kept going anyway. And this week, it mattered: the FDA approved the first therapy targeting RAS, the mutation driving the vast majority of pancreatic cancers. The pivotal trial was led by Dr. Wolpin. It meaningfully extended survival for patients with metastatic disease. Not a cure, Kyle is clear about that, but a milestone. The first one of its kind for a disease that has taken so much from so many families. In his own words, he credited the thousands of researchers, clinicians, trial participants, and funders who kept going when nothing looked like it was changing. Kyle, you’re one of those people too. Don’t forget that.

Audrey Jetté

Audrey Jetté is a college fellow at Elon University. She walked into a meeting with Georgia’s 7th District Representative Richard McCormick, MD, MBA, a physician-turned-congressman who had just joined the Congressional Colorectal Cancer Caucus, and she came prepared. She came with her mother, Kim Jetté, a stage 4 colorectal cancer survivor. She came with others connected through Fight Colorectal Cancer and Georgia gastroenterologists. And she came with a fact that should stop every person in that building cold: colorectal cancer is now the number one cancer killer for people under 50 in the United States, and yet it is the only top-five cancer killer without a dedicated research program in the CDMRP. That gap is a policy failure, and Audrey named it exactly like that. But the line that stuck with me most was this: cancer isn’t a bipartisan issue, it’s a non-partisan one. That framing matters. In a moment when everything feels like it’s being sorted into opposing teams, she walked in and reminded a congressman that this one doesn’t have to be. That’s real advocacy, not just showing up, but knowing what to say when you get there.

Sharon Rivera Sanchez

Sharon Rivera Sanchez leads with a number: roughly 1 in 4 colon cancer diagnoses happens in the emergency room, usually at an advanced stage. Read that again. One in four. That’s not a screening gap, that’s a system that isn’t reaching the people it’s supposed to reach. Sharon is a TNBC survivor, a clinical trial participant, and a colorectal cancer advocate, which means she knows firsthand what it means to navigate a disease from inside it. Through Trials of Color, she took that knowledge to Petersburg, Virginia, partnering with The Regional Stop the Violence Initiative and their Slingshots program to bring colon cancer awareness directly into the neighborhood — alongside health education and screenings through the VCU Massey Comprehensive Cancer Center van. No clinic to travel to. No appointment to schedule. Just information and access, brought to the people who need it most, in a place they already trust. That’s what health equity looks like when it’s actually working. Sharon showed up and made it real.

If any of these stories moved you, go follow these three humans. They’ve earned it.

And if you know someone doing work like this — a patient advocate, a community organizer, a researcher who’s also a caregiver, anyone fighting for change in the cancer and health space — nominate them for a future edition. You can reply to this post or message me. This newsletter exists because of people like you pointing me toward people like them.

Subscribe if you haven’t yet. Tell a friend. And thank you for being here.

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.