Advocacy at Work

Jud Kimmel spent most of his career in public policy and finance.

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.

John Duffield was living a completely normal life.

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.

The first symptom was acidity in his stomach.

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.

A retired special forces colonel. A stage 3C colon cancer diagnosis. And how the same discipline that made him a warrior almost took him down

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.

Ryan Bowman was born in 1991 with five congenital heart defects. One in 10 million.

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.

From dismissed period cramps to appendix cancer discovery: Why rare disease awareness months matter—and how one advocate is making sure no one else misses the warning signs

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: [email protected]

* 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.

I’ll be honest. When our mutual friend Vincent connected me with Adrienne Falcone Godsell, I wasn’t sure exactly where the conversation was going to go.

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

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

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

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

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

That last one changed everything.

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

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

What she’s seen food actually do

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

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

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

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

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

The advocacy you don’t see on Capitol Hill

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

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

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

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

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

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

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

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

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

The form changes. The function doesn’t.

One big wish

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

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

That line stopped me cold.

I’ve been thinking about it ever since.

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

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

Until next time.

— Tim

A suburban mom’s fall on a hiking trail led to a metastatic cancer diagnosis, and an unexpected path through clinical trials, liver transplant, and discovering that advocacy is just as healing as it is transformative

Carole Motycka was living the dream.

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

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

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

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

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

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

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

The Language of Cancer: When Education Becomes Survival

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

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

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

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

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

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

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

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

The Six-Month Sentence and the Pivot Nobody Expected

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

And then: acute liver failure.

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

But she remembers two specific things.

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

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

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

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

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

But he said she had a chance at life.

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

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

But she was all in.

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

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

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

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

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

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

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

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

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

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

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

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

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

Jason saved her life.

The Hardest Part: Surrendering Control in the Process

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

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

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

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

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

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

After Transplant: The Unexpected Gift of Advocacy

Carole spent a year in acute care after her transplant.

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

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

And something unexpected happened: she started healing.

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

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

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

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

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

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

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

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

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

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

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

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

The Healing Dimension Nobody Talks About

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

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

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

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

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

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

The Magic Wand: One Change Above All Others

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

Prevention.

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

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

That’s where her energy now goes.

Circle of Life: From Hopeless to Hope-Giver

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

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

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

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

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

Connect With Carole

If you want to reach Carole or learn more:

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

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

* Email Carole: [email protected]

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

Final Thoughts

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

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

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

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

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

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

Twenty-four years ago, Vanessa Ghigliotty was 28 years old and had just graduated college.

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

Then she was diagnosed with stage 4 colon cancer.

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

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

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

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

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

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

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

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

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

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

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

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

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

The Stupid Cancer Moment: When She Found Her People

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

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

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

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

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

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

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

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

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

From Anger to Action: How Advocacy Actually Works

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

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

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

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

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

It’s the slow wheel that keeps turning.

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

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

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

The Role of Community: Why Finding Your People Matters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Helper Learning to Ask for Help

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

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

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

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

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

The Three Asks: If Resources Were Unlimited

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

First: A law protecting young people from diagnostic delays.

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

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

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

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

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

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

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

Third: Transportation assistance for cancer care.

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

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

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

24 Years Later: What It Means to Earn Your Seat

Vanessa makes a point that younger advocates need to hear:

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

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

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

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

Connect With Vanessa

If you want to reach Vanessa:

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

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

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

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

Final Thoughts

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

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

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

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

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

But it’s working.

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

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

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

Andy Goodspeed ignored his symptoms for nearly three years — heartburn, fatigue, back pain he chalked up to age and restaurant work. By the time doctors found the truth, he had stage 4 gastric cancer in his bones, liver, and lymph nodes, and six months to live.

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

We talk about:

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

* Why survivorship can be as isolating as diagnosis

* His push for endoscopy screening guidelines for stomach cancer

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

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

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

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

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

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

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

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