Advocacy at Work

What happens when patients and healthcare professionals are experiencing the same problem, but seeing very different parts of it?

In my conversation with Brooke Boring, she described something that came up when the Hematology Oncology Pharmacy Association, better known as HOPA, brought patient advocacy organizations and professional organizations together around chemotherapy drug shortages.

Some patient organizations knew about the shortages from the news but weren’t hearing the same concerns directly from their communities. Meanwhile, pharmacists and other healthcare professionals were working through difficult decisions and finding ways to keep care moving.

Brooke’s explanation was that healthcare teams were doing so much work behind the scenes that patients didn’t necessarily see the disruption.

That doesn’t make either perspective wrong. It shows why we need both. A patient can explain what it feels like to receive care. A pharmacist can explain what it took to make that care possible. Putting those experiences together gives us a fuller picture of what needs to change.

The person on your care team you may not know

Brooke is HOPA’s associate director of health policy and advocacy. Her work includes legislative advocacy, patient education, and bringing the patient perspective into the organization’s work.

I serve on HOPA’s patient advisory panel, so I’ve had the opportunity to see some of that work firsthand.

But when I was going through treatment, I didn’t even know I had an oncology pharmacist.

That’s why I wanted Brooke to explain what these professionals actually do.

She described work that goes well beyond preparing or checking medications. Depending on the care setting, oncology pharmacists may help patients understand treatment, address side effects, and work through barriers to getting medications. That can include calls to insurers or identifying patient assistance options.

Some of that happens directly with patients. Some happens where we never see it.

As Brooke pointed out, patients may not know about an access problem because someone has already been working to resolve it.

During our conversation, I encouraged patients and caregivers to ask about the oncology pharmacist on their care team. Get to know who they are and how to reach them.

When you’re trying to understand treatment or explain what you’re experiencing, it helps to know who you can ask. You shouldn’t have to figure out every part of the system before you can get help navigating it.

Your experience belongs in the conversation

I ask every guest how they define advocacy. Brooke’s answer was broad: arguing for a cause.

That might mean meeting with a member of Congress. It might mean sending a message, making a call, or helping someone understand an issue you care about.

“I think there’s a place for everyone in advocacy,” she said.

That matters because policy can feel like something other people do. People with the right credentials, the right vocabulary, or the confidence to walk into a congressional office.

But Brooke described how the atmosphere in a meeting can change when a patient introduces themselves. Staff members turn toward that person and ask about their experience.

The pharmacists bring their own stories, too. They can explain why they entered oncology, what they do every day, and the barriers they encounter while helping patients.

Those contributions aren’t interchangeable. They give different meaning to the same issue.

A patient might explain what a delay meant for their family. A pharmacist might explain the steps involved in trying to resolve it. Together, they help connect a policy discussion to what is happening in someone’s life.

You don’t have to know everything about legislation to explain what happened to you. And you don’t have to tell every part of your story to make a useful contribution.

Patient involvement shouldn’t stop at the invitation

HOPA’s work also offers something for professional associations, healthcare organizations, and industry organizations to consider.

Brooke described involving patients in the development of education materials, asking what resources they need, and including patient perspectives in conference sessions alongside scientific and operational discussions.

There’s a difference between asking someone to review a resource and asking what resource would have helped them in the first place. Both can be useful, but the second question creates room for patients to influence the direction of the work.

For organizations, that raises some practical questions:

* Are patients involved early enough to shape the priorities?

* Are you asking what they need, or only asking them to respond to what you’ve already developed?

* Can they participate in ways that account for treatment, work, caregiving, and travel limitations?

* Do they know what happened as a result of their contribution?

Brooke described both in-person and virtual Hill Days. Having different ways to participate matters. Someone may have an important perspective without being able to travel to Washington.

The same principle applies beyond legislative advocacy. If an organization wants to hear from more people, it needs to consider what makes participation possible.

Patient involvement is more useful when it becomes part of how the work happens, not just one item on the agenda.

A shared message doesn’t require identical experiences

The drug shortage discussion brought that point into focus.

Brooke described congressional staff hearing different information from different organizations and struggling to understand what action would be most useful. HOPA brought organizations together to work toward a shared understanding of the problems and potential policy responses.

That required listening across perspectives, including perspectives that didn’t initially seem to match.

For patients, caregivers, pharmacists, and other healthcare professionals, there’s something worth keeping in mind here: not seeing a problem yourself doesn’t mean it isn’t happening.

And seeing a problem from one position doesn’t mean you understand every consequence.

That’s a reason to work together, not a reason to decide whose experience counts more.

When organizations build coalitions, the goal shouldn’t be to make everyone’s story sound the same. It should be to understand how those stories connect and what they tell us about the changes people need.

You can start smaller than you think

Brooke was also honest about the pace of policy work. Advocacy doesn’t necessarily produce a bill that passes a few weeks later.

She described other signs of progress: staff members remembering previous meetings, understanding the role of oncology pharmacists, and more patients and professionals participating.

Those relationships don’t replace policy change. They help build the understanding needed to pursue it.

For someone wondering where to begin, Brooke pointed to letter-writing campaigns that allow people to add their experience to a prepared message. A congressional meeting isn’t the only entry point.

When I asked what she would change with a magic wand, her answer centered on access: people being able to receive treatment regardless of where they live or their financial circumstances.

That connects the policy work back to the patient. What does an available treatment mean if someone can’t actually get it?

Start with a question you need answered, a barrier you’ve experienced, or something you wish the people making decisions understood. You don’t have to represent everyone. You can contribute what you know and listen to what others bring.

Connect with Brooke and HOPA

Interested in getting involved in HOPA’s advocacy work? Email HOPA’s advocacy team [email protected] to ask about opportunities such as Hill Days or the patient advisory panel.

To connect with Brooke about this conversation or her work, email Brooke Boring [email protected].

Watch my full conversation with Brooke in the video embedded in this post.

Subscribe to Advocacy at Work at AdvocacyAtWork.com for more conversations about lived experience, patient partnership, and the work of making change. It’s free.

Who else should be part of this conversation? Leave a comment or reply with a suggestion for a future guest and what you think we could learn from them.

Daniel G. Garza was already thinking about making a video on the drive home from his anal cancer diagnosis.

He had spent years speaking publicly about living with HIV. Sharing what was happening to him was familiar territory. So when he received another diagnosis, he went straight to what he knew: telling people about it.

He recorded 30 days of videos in English and Spanish. Some captured good days. Others showed tears, fear, and what he described as “ugly crying.” People reached out to say those videos helped them understand their own diagnosis or what someone they loved was experiencing.

But helping other people came with something Daniel didn’t fully recognize at the time. He hadn’t given himself space to process what had happened.

“The balance of that is that I had no privacy,” he told me. Years later, he sought therapy to work through what he hadn’t made room for then.

That’s an important part of this conversation. A story can help someone else while the person telling it is still trying to understand it themselves.

Advocacy doesn’t always start with a plan

Daniel is a long-term survivor of HIV and anal cancer, and the director of outreach for Cheeky Charities. His work connects with HIV, cancer, and LGBTQ+ communities, drawing on experiences that began long before anyone introduced him as an advocate.

He talked about being bullied as a child, learning to defend himself, and then wanting to protect other people. After being outed at 17, he became someone other gay people could turn to when they didn’t feel supported.

When he was diagnosed with AIDS in 2000, advocacy started closer to home. He was learning from doctors and nurses while trying to explain HIV to his family.

Then an opportunity to speak on Univision brought his experience to a much larger audience. Invitations to nursing schools and other settings followed. What began with explaining his own life became a way to help others understand lives they might not otherwise encounter.

When I asked Daniel how he defines advocacy, his answer was straightforward:

“Taking my lived experiences and using them to be of service to other people.”

There’s room in that definition for more than a conference presentation or a public campaign. It can mean helping someone prepare a question, sharing something you learned, or listening without trying to fix everything.

It also leaves room for people who don’t want to tell their story publicly. Being of service doesn’t require giving everyone access to your life.

What people don’t see

During our conversation, I talked about how people see an advocate on television or at a conference and think that’s what advocacy looks like. They don’t necessarily see what it took to get there or what comes along with it.

Daniel described people telling him how busy he looked on social media. He was traveling, working, and seemingly doing well. What they didn’t see were the mornings when his bones hurt or the exhaustion after a day of calls, computer work, and preparing another speech.

He was clear that he loves his work. He was also clear that his body has been through a lot. Both can be true.

A person can be good at explaining their experience and still need help carrying it. They can make people laugh and still have difficult days. They can show up prepared without having everything worked out.

For patients and caregivers, Daniel’s experience offers an important distinction: sharing your story and processing your story aren’t necessarily the same thing.

You can decide that something is private. You can change your mind about what you’re comfortable sharing. You can take time before turning an experience into something useful for someone else.

The value of your experience doesn’t depend on how quickly you make it public.

What organizations can take from this

For healthcare organizations, professional associations, pharmaceutical companies, diagnostic companies, and biotechnology companies, there’s a practical question here:

When you invite a patient advocate to participate, are you making room for the person or only the contribution you want from them?

Daniel’s account of pain, preparation, and public visibility gives that question context. So does his wish for more funding and research support, particularly for the Latino and LGBTQ+ communities he works with. He wants to reach more people and exchange ideas with advocates in other places. The desire is there. Resources remain part of the challenge.

An invitation alone doesn’t address those needs.

Applied to patient engagement, this conversation points toward a few concrete practices:

* Ask what someone needs to participate rather than assuming their previous experience makes support unnecessary.

* Make it clear that an advocate can decline a question or keep part of their story private.

* Discuss compensation, expenses, preparation time, and accessibility before the event.

* Invite patients to help shape the questions and priorities, not only provide a personal story after the agenda is set.

* Explain what will happen with their input and follow up afterward.

These are ways to put partnership into practice.

An advocate’s ability to deliver a compelling presentation shouldn’t become a reason to overlook their limits. And a patient’s story shouldn’t be the only part of their expertise an organization is willing to hear.

Passing something on without prescribing a path

Daniel loves teaching. He described his workshops as a buffet: take the pieces that work for you, then share what helps with someone else.

“I want you to pick up the baton and run with it,” he said. “It’s not meant to stop with us.”

That approach leaves room for different experiences. What helped Daniel may not be what helps the next person. His humor is part of how he connects, but not everyone needs to make a joke out of something painful.

When I asked what he would change with a magic wand, he imagined a space where people could create something from what they’d been through. That might be comedy, a story, a painting, or a sculpture. He wanted people to understand that a diagnosis doesn’t mean they’re broken.

That isn’t an obligation to turn illness into a lesson or a project. It’s an invitation to find an expression that belongs to you.

For someone working through a diagnosis, that might start with a private conversation. For an organization, it might start with asking a patient what matters before deciding what you need from them.

Before asking someone to share their story, ask what would help them feel supported in sharing it. And if you’re the person being asked, you get a say in the answer.

Watch the full conversation with Daniel G. Garza in the video accompanying this post.

Subscribe to Advocacy at Work at AdvocacyAtWork.com for more conversations about what happens when lived experience turns into action. It’s free.

Have a suggestion for a future guest? Leave a comment or reply to this post with their name and what you think we could learn from their experience.

Guest resources and episode links

* Daniel G. Garza on YouTube

* Cheeky Charities

* Earlier Advocacy at Work episode with Cheeky Charities founder David Russo

There are moments when you realize that caring about someone is not the same as knowing how to help them.

For Andrea Katz, that moment came in 2013, when her mother was diagnosed with stage 4 cholangiocarcinoma, a cancer of the bile ducts. It was a disease Andrea and her family had never heard of. Information was difficult to find. The diagnosis moved fast. Her mother died 44 days later.

That experience changed the direction of Andrea’s life.

Today, Andrea is an integrative nutrition health coach, founder of Best You Nutrition, and a member of the GI Cancers Alliance Patient and Caregiver Advisory Board. She specializes in digestive health, but her work is also about something larger: helping people understand that they can participate actively in their own care and in the care of the people they love.

Her story is a reminder that advocacy does not always begin with a title, a nonprofit, or a big public platform. Sometimes it begins with staying up late, looking for answers, and deciding that you are going to ask the questions others may be afraid to ask.

The questions that needed asking

After Andrea’s mother was diagnosed, Andrea did what many caregivers do. She went looking for information.

She researched cholangiocarcinoma, treatment options, clinical trials, surgeries, and whether there might be care available outside their immediate area. She was not trying to second-guess the medical team. She wanted to walk into the next appointment informed enough to ask better questions.

Her father was hesitant.

Like many people, he had grown up with the belief that doctors are authority figures and that asking too many questions could somehow be seen as challenging them. Andrea understood the concern, but she also knew that her mother’s care was too important to let fear keep the family quiet.

“I wanted to learn as much as I could in a short amount of time so that the next morning, when we had an appointment with her physician and the oncology team, I had some informed questions,” she said.

Andrea came to the appointment with about eight questions. Her father told her she should not ask them. But when she asked the oncologist whether he had time to talk, the answer was yes.

The doctor did not take offense. He answered what he could, promised to follow up on what he did not know in the moment, and told Andrea’s father that he wished more families came to appointments with those kinds of questions.

That matters.

Too many patients and caregivers hold back because they do not want to appear difficult, uninformed, or disrespectful. But asking questions is not the same as questioning a clinician’s expertise. It is a way to understand the choices in front of you and to make sure the care plan reflects the person living through it.

Andrea put it simply: “Nobody cares more about your health than you.”

That is not an indictment of doctors, nurses, or loved ones. It is a reality of healthcare. Clinicians have many patients. Families have their own fears and responsibilities. The patient, or the person closest to them, is the one living in the body, managing the symptoms, and carrying the day-to-day impact of the diagnosis.

Being an active participant can help make sure important details do not get lost.

From loss to a new direction

Andrea had always been interested in health. She grew up as an athlete and earned her first degree in psychology. But after losing her mother, her curiosity about one rare gastrointestinal cancer expanded into a deeper interest in digestive health.

She went back to school and became a certified integrative nutritionist. Her psychology background did not disappear. It became part of how she sees nutrition and wellness.

Food is not just food.

It is family tradition. It is comfort. It is routine. It can be stress, reward, fear, culture, and memory all at once. That is why advice that sounds simple on paper can be difficult to apply in real life.

“If it was that easy, we wouldn’t have an obesity epidemic in North America,” Andrea said. “We wouldn’t have heart disease like we have or diabetes like we have.”

Her work focuses on digestive health, but she does not treat the gut as an isolated part of the body. She sees it as connected to mood, sleep, stress, immune health, skin conditions, appetite, and the way people feel in their everyday lives.

People often come to her wanting help with one specific concern. Maybe they are not sleeping well. Maybe they are stressed, experiencing digestive symptoms, struggling with energy, or trying to make changes after a diagnosis. Andrea starts by helping them look at the bigger picture.

Instead of chasing one symptom at a time, she asks a question many people do not expect:

How is your gut?

That question can open a different kind of conversation. It can help people see that their body is interconnected, and that changes in one area may affect another. It can also remind people that health is not only about reacting when something goes wrong. It is also about learning what helps us feel better, function better, and advocate for ourselves before a small concern becomes a bigger one.

Advocacy is active participation

When I asked Andrea what advocacy means to her, she did not give a formal definition.

She talked about being an active participant in your care.

That can look different for everyone. It may mean bringing written questions to an appointment. It may mean asking a doctor to explain a medical term in plain language. It may mean researching a diagnosis, finding a specialist, keeping track of symptoms, or asking for a second opinion.

For a caregiver, it may mean speaking up when the person you love is too exhausted, overwhelmed, or ill to speak for themselves.

Andrea knows that role personally. She helped advocate for both of her parents during their cancer experiences. She also knows that people can be grateful for their medical teams while still asking hard questions.

Her mother’s doctors, nurses, and oncologists were, in her words, “fantastic.” Advocacy was not about assuming anyone did not care. It was about making sure her mother’s family understood the options and could participate in decisions.

That distinction is important for patients, caregivers, and the organizations serving them.

Healthcare professionals and organizations do not need patients and families to arrive with all the answers. They need to make it clear that questions are welcome. They need to create room for people to say, “I do not understand,” or “Is there another option?” or “What should we be paying attention to?”

Information matters, but people also need the confidence to use it.

Keeping her mother’s story visible

Andrea continues to speak about her mother because she does not want her memory to disappear into a diagnosis few people recognize.

During Cholangiocarcinoma Awareness Month this past February, Andrea reached out to media outlets in Canada to help raise awareness. The resulting coverage brought patient and caregiver voices into a national conversation. It also helped connect her with the GI Cancer Alliance, where she now serves alongside patients and caregivers from the United States, Canada, the United Kingdom, and Africa.

The group is working to improve awareness, information, testing, and advocacy across 12 gastrointestinal cancers.

When Andrea’s mother was sick, finding support and accurate information was much harder. There was no Canadian foundation she could turn to at the time. She found a U.S. newsletter and a Facebook group, and that was about it.

More resources exist today, but low-awareness cancers still leave too many people feeling isolated and underinformed.

Andrea’s story shows why sharing matters. One person’s willingness to speak about a difficult experience can help another family find language, resources, questions, or community they did not know existed.

You never know where a story will lead.

Being there without adding pressure

If Andrea had a magic wand, she said she would want to see a cure for cancer. But while research continues, she also wants people to better understand how to support someone facing illness.

That support is not always as simple as asking, “What do you need?”

The question comes from a good place, but someone managing cancer, caregiving, grief, treatment, or uncertainty may not have the energy to identify a task, make a plan, and delegate it to someone else.

Andrea hopes we can become better at being present without making people do more work to receive help.

Sometimes support looks like showing up with food. Sometimes it means offering a ride, checking in without expecting a reply, sitting quietly, or asking a more specific question: “Can I take care of dinner on Thursday?” Sometimes it is simply letting someone know that they do not have to carry everything alone.

Andrea describes herself as strong, but also sensitive. She said people may see the confidence on the outside and miss how deeply things affect her.

That is true for many of us.

We may look capable while carrying more than people realize. We may be the person asking questions, supporting others, or appearing calm in the room. That does not mean we are not scared, tired, emotional, or in need of support ourselves.

Andrea’s work in digestive health, caregiving, and GI cancer advocacy comes back to the same idea: pay attention. To your body. To the questions you have been afraid to ask. To the people you love. And to the stories that can help someone else feel less alone.

To learn more about Andrea Katz and her work, visit Best You Nutrition or follow @bestyounutritioncoach on Instagram and Facebook.

Listen to the full episode of Advocacy at Work on YouTube, Apple Podcasts, or Spotify.

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