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

We talk about:

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

• Why survivorship can be as isolating as diagnosis

• His push for endoscopy screening guidelines for stomach cancer

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

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

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

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

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

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

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

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

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

He ignored it.

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

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

And he didn’t die.

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

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

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

The Birth of Stupid Cancer: Giving Permission to Be Angry

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

Matthew saw something missing: permission to be angry.

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

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

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

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

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

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

The Evolution: When Health Insurance Becomes the Greater Threat

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

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

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

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

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

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

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

“We the Patients”: A Book for This Moment

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

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

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

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

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

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

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

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

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

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

That’s it. That’s the issue.

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

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

This is where advocacy becomes activism becomes organizing.

From Community Care to Civic Power

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

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

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

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

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

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

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

A Day in the Revolution

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

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

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

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

A Piano, a Tumor, a Voice

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

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

And now he’s an organizer.

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

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

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

The piano was one path. This is another.

And it might change healthcare in America.

Connect With Matthew and “We The Patients”

If you’re ready to organize:

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

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

• Personal Website: matthewzachary.com

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

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

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

Final Thoughts

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

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

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

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

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

And it might just be the revolution we need.

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

The White Coat Program: When a Hospital Invites You Inside

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

It starts with recognition.

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

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

Debbie laughed and asked what a cardiologist thinks is sexy.

“A lung transplant,” he said.

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

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

But Debbie didn’t wait.

The Pandemic Gift: Donating Alone, Together

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

Then they flew back. COVID shut down the country.

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

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

She went through with it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Turning Tragedy Into Advocacy

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

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

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

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

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

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

They chose action. Together.

The Hospital Council: Understanding Patient Experience From the Other Side

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

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

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

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

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

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

Debbie’s Definition of Advocacy: Kindness Without Expectation

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

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

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

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

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

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

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

The Dream: Planting Seeds Across America

If resources were no object, what would Debbie do?

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

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

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

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

The Pattern: Converting Circumstance Into Community Action

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

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

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

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

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

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

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

Connect With Debbie

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

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

• Email: debbielundberg@debbielundberg.com

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

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

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

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

Final Thoughts

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

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

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

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

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

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

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

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

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

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

Seven years.

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

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

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

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

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

Being a Therapist Who Gets It Because He Lived It

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

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

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

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

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

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

From Broken to Healer: The Why Behind the Work

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

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

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

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

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

The Ripple Effect: Measuring What Matters

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

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

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

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

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

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

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

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

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

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

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

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

Not activism. Not policy work. Not necessarily politics.

Service.

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

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

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

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

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

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

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

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

Being Married to Another Therapist: What Could Go Wrong?

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

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

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

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

The Dream: Healing Across the Globe

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

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

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

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

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

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

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

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

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

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

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

What Seven Years Costs Us

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

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

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

But it doesn’t have to be.

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

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

Connect With Carlos

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

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

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

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

Final Thoughts

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

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

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

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

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

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

That’s the real power of advocacy.

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

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

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

Sarah Leathers — Food Is Medicine Is a Movement

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

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

Diana Holmes, MBA — Painting the Hill Purple

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

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

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

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

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

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

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

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

The Night That Changed Everything

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

He woke up from a coma at Tampa General Hospital.

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

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

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

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

Left for Dead. Coming Alive. Living Proof.

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

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

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

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

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

Advocacy Is Just Sharing Your Story

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

“Advocacy to me is sharing your story.”

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

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

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

The Broken Wrist Question

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

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

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

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

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

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

One Is Enough

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

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

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

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

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

Almost none of them set out to become one.

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

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

Sound familiar?

Advocacy as therapy

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

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

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

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

You don’t have to do it all

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

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

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

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

That’s enough. That has always been enough.

The hospital room phone call

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

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

My nurse waited the whole time. She heard everything.

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

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

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

What Scott is working on now

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

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

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

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

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

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

That’s the whole point, after all.

— Tim

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

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

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

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

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

Understanding Adrenal Insufficiency (The Simple Version)

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

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

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

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

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

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

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

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

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

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

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

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

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

Starting Small: Emergency Kits and Filling Local Gaps

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

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

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

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

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

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

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

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

The Paramedic Protocol Victory: Local Change That Saves Lives

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

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

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

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

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

That’s not small. That’s transformational.

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

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

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

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

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

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

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

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

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

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

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

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

The Magic Wand: A Vision for Emergency Response Across America

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

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

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

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

The Real Power of Local Advocacy

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

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

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

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

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

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

How to Get Involved

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

• Connect with local adrenal insufficiency support communities and nonprofits

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

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

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

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

Final Thoughts

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

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

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

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

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

That moment of realization sparked a question: What if people could talk about colorectal cancer without shame? What if, instead of whispering about it in the dark, we celebrated our butts proudly and openly? Out of that spark came Cheeky Charity, a nonprofit that uses humor, vulnerability, and creative activism to do something radical: make colorectal and anal cancer impossible to ignore. Five years later, David has built a movement that’s proving sometimes the cheekiest approach is also the most effective.

The Origin Story: From COVID Van to Cancer Advocacy

David’s journey to founding Cheeky Charity began, improbably, in a converted Sprinter van during a pandemic-era “Eat, Pray, Love” adventure across America. While traveling solo through national parks, he had limited resources—a camera and a social media account. But he had something more valuable: a clear purpose.

Five or six years earlier, he’d fought with his primary care physician for a colonoscopy. It took months. When he finally got one, doctors found precancerous polyps. Had he waited much longer, those polyps might have become cancer. The experience triggered a deeper investigation into his family history, revealing the cancer deaths that had been whispered about and hidden away.

Around that same time, David read alarming research from Yale University showing an uptick in colorectal cancer diagnoses among young adults. The pieces clicked together: this disease was serious, it was getting worse, and it lived under a thick blanket of stigma that prevented people from talking about it, getting screened, or seeking help.

“What can I do about it?” became the driving question. And David’s answer was distinctly creative: what if people posted photos of their butts on Instagram with public health messages attached?

Thus was born Cheeky Charity, an Instagram profile dedicated to “cheeky” photos with a purpose. At the most extreme, David would find stunning vistas in national parks and photograph his own backside against beautiful landscapes. At the more modest level, he’d post with varying degrees of cheekiness, always paired with messaging about colorectal cancer awareness, screening, and prevention.

“I would go into the most beautiful areas of national parks and more or less take butt picks,” David explains. The goal was simple but ambitious: gain a following, build an audience, and create space to educate people about a disease they’d rather not think about.

It worked. Within a year, Cheeky Charity had 5,000 followers. The concept was novel, the tone was irreverent, and people were paying attention.

From Idea to Organization: The Power of Collaboration

What happened next illustrates a crucial principle of successful advocacy: surround yourself with talented people who believe in the mission.

When David decided to expand beyond solo social media posts, he reached out to his network. A friend named Taylor who worked in design at Google created the logo—and when David’s first instinct was to dismiss it as “too basic,” Taylor pushed back. That logo became foundational to Cheeky Charity’s brand identity. Jake helped build out graphic design and social media infrastructure. Andrew Wartman became director of development, graphic designer, and website developer all in one, creating the visual ecosystem that makes Cheeky Charity instantly recognizable.

“I had some of the most incredible people in the world come on to help me,” David reflects. “They weren’t necessarily people that had a connection to colorectal cancer, they were just people that were passionate.”

With this team in place, David launched the Cheeky Challenge, asking people to post their own cheeky content on social media. The campaign resonated. It led to connections with organizations like the Prevent Cancer Foundation, secured the organization’s first grant for local work in Palm Springs, and eventually earned Cheeky Charity an invitation to present at the American Cancer Society’s National Colorectal Cancer Roundtable (NCCRT).

David remembers walking into that first major advocacy conference as an outsider—”this random kid who’s posting wacky stuff”—terrified of judgment. Instead, he found an entire community of passionate advocates dedicated to colorectal cancer awareness. “I was completely embraced,” he recalls. “Everybody was incredibly wonderful.” More than that, he discovered a landscape of programs and initiatives he never knew existed, organizations doing incredible work to raise awareness and support patients.

The experience taught him something essential: in advocacy, you’re not alone. And collaboration amplifies impact exponentially.

Amplifying the Message: From Solo Creator to Movement

One of the most powerful moments in Cheeky Charity’s evolution came when David received photos from a Pride Festival he wasn’t attending. A group of volunteers had set up a Cheeky Charity booth, complete with the branded tent, backdrop, and table, and were representing the organization independently.

“That was one of the most amazing feelings that I feel like I might’ve ever had in my life,” David says. “This thing that was nothing, that kind of went from being an idea into reality, is now being amplified through people that are also passionate.”

Today, Cheeky Charity’s primary activation happens at Pride Festivals across the country. The organization maintains at least 10 by 10 booths at Pride events where volunteers and community members show up to represent the brand, engage visitors, and spread the message about screening and prevention.

But David is honest about a gap in the organization’s infrastructure: they don’t yet have a formal system for empowering, onboarding, and supporting these ambassadors. “I feel like I could do a much better job of making people feel more connected,” he admits. “There’s no formal, we honestly don’t really have a formal system for helping empower and onboard and educate and making people feel like they’re part of the cheeky charity community, even though I know of hundreds of people who are.”

This vulnerability, acknowledging the gap while recognizing the reality of what’s already happening organically, is characteristic of David’s leadership. He’s building something real, recognizing its power, and being honest about where it needs to grow.

Butts and Badges: Making Healthcare Providers Part of the Solution

Cheeky Charity’s newest initiative reveals how the organization is scaling its impact through creative, accessible strategies. The Butts and Badges program is elegantly simple: send cheeky pins to healthcare providers, who wear them next to their name badges in clinical settings.

The theory is straightforward but powerful: when a provider wears a Cheeky Charity pin, it starts conversations. Patients see it and ask about it. That opens a dialogue about colorectal cancer screening and prevention. The nudge becomes a conversation; the conversation becomes a screening; the screening saves a life.

Cheeky Charity sent out 15,000 of these pins to healthcare providers across the country in the program’s initial rollout. But David’s vision goes much bigger.

“The Butts and Badges program implies that it’s a person wearing a badge, but I think there’s opportunity to basically empower anybody,” he explains. “Any individual who’s out there to wear our pin or share our logo or share our message, they can become what I’m currently tossing around as a cheeky champion.”

A cheeky champion isn’t a formal role. It’s simply someone—provider, patient, survivor, advocate, friend—who believes in the mission enough to wear the pin, share the message, or start the conversation. By lowering the barrier to entry, Cheeky Charity can scale beyond what any single person or organization could accomplish alone.

The Introvert’s Dilemma: Pushing to Show Up

One of David’s most striking revelations comes late in the conversation: he’s an introvert. A very large introvert. “Being in crowds is very draining to me,” he admits. “I’m constantly pushing myself to put myself out there.”

Yet every time someone encounters David at a cancer advocacy event, they see a person fully present, engaged, and energized. How does an introvert become the face of a growing national movement?

David explains that in college, he became an RA to force himself to engage. He joined the Ambulance Corps for the same reason. He pursued an MBA specifically to improve his communication skills despite an engineering background. “I’ve kind of always been doing these kind of masochistic things to kind of torture myself, but I absolutely love it,” he says with self-aware humor.

This is an important lesson for anyone in advocacy: you don’t have to be an extrovert to do this work. You just have to be willing to push yourself beyond comfort for a cause you believe in. And when you do, you meet extraordinary people and expand your life exponentially.

“I’m so grateful for pushing myself because I’ve met such unbelievable people and it’s expanded the quality of my life exponentially,” David reflects. The relationships formed through Cheeky Charity. with fellow advocates, with people in the cancer community, with collaborators, have enriched his life in ways he couldn’t have anticipated.

The Dream: Celebrity, Vulnerability, and Museum Exhibits

If resources were unlimited, what would David want to do with Cheeky Charity?

His answer is ambitious and artistically compelling: a professional photography campaign featuring celebrities—modeled on ESPN’s famous “ESPN Bodies” issue that showcased nude photography of elite athletes. But instead of celebrating athletic achievement, David’s vision would celebrate vulnerability and human connection through the lens of colorectal and anal cancer.

The photos would become a rotating museum exhibit traveling to major museums worldwide. Alongside the photographs would be video documentation of the shoots, behind-the-scenes content, and audio of the participants’ stories—survivors, advocates, celebrities—sharing why they stepped forward.

“So as people are kind of walking around the exhibit, they’re hearing the message of people’s stories and feeling that impact,” David explains. The goal is to normalize conversations about these cancers by placing them in high-art contexts, to show vulnerability as strength, and to demonstrate that everyone—no matter how famous or accomplished—faces the same human fears and needs.

“It’s basically a pipe dream that is on the shelf that I’m, every once in a while I’ll be like, is this feasible? No. Okay, let’s keep going,” David says with a laugh. But the dream is there, fully formed, waiting for the day when resources align with vision.

Collaboration as Priority: The Real Secret to Scaling

Before the lightning round questions, David emphasizes something he realizes is equally important as the initiatives themselves: collaboration.

“One of the big things that I’m trying to focus on is building very, very strong collaborative relationships with all of the other organizations that are in the space. I feel like that’s so critical,” he stresses. Collaboration isn’t just nice-to-have; it’s foundational to maximizing impact.

This commitment to partnership is evident in how Cheeky Charity operates. The organization doesn’t see itself as competing with established advocacy groups. Instead, it sees itself as part of an ecosystem where each organization brings unique strengths. Cheeky Charity’s strength is breaking taboos and reaching young people through humor and vulnerability. Other organizations excel in different areas. Together, they can accomplish more than any single entity.

For newer organizations building advocacy programs, this is essential wisdom: the most sustainable path isn’t building a standalone empire. It’s finding your niche, excelling at your unique mission, and collaborating generously with others working toward the same goal.

Getting Involved: How to Become a Cheeky Champion

For anyone inspired by Cheeky Charity’s approach, the path to involvement is accessible:

Visit cheekycharity.org to learn about the organization’s work and programs. Follow them on Instagram at @CheekyCharity for ongoing awareness campaigns and community engagement. Check out ScreenYourButt.org, their new educational platform focused on making screening information accessible and approachable.

If you’re a healthcare provider interested in the Butts and Badges program, you can participate by wearing a pin and starting conversations with patients about screening. If you’re interested in volunteering at Pride events or other community activations, reach out to the organization about how to get involved.

Most importantly: if you believe in using humor, vulnerability, and creativity to break down stigma around colorectal and anal cancer, you can become a cheeky champion right now. Wear a pin if you have one. Share the message. Start the conversation. That’s what advocacy looks like at Cheeky Charity.

The Unseen Work: Building Movements Takes Time

What stands out about David’s story is how he’s managed to build something real—501(c)(3) nonprofit status, national reach, media partnerships, professional execution—while remaining humble about how much work remains.

He acknowledges the gaps in their ambassador program. He admits being an introvert pushing himself into crowds. He shares his “pipe dream” of a museum exhibit with the self-aware humor of someone who knows it’s a long shot. Yet he’s moving forward anyway, steadily amplifying the message through Pride events, the Butts and Badges program, and the collaborative relationships he’s nurturing across the advocacy landscape.

This is the real work of advocacy: showing up, being honest about limitations, celebrating small wins, collaborating generously, and always—always—keeping the mission front and center. Not everyone who does this work needs to be a natural extrovert or have all the answers. They just need to care enough to start, be willing to learn, and build with others who share the vision.

David Russo and Cheeky Charity prove that the cheekiest approach isn’t frivolous—it’s sometimes the most effective way to get people to pay attention to something that matters. And once you have their attention? That’s when the real advocacy begins.

Final Thoughts

In a healthcare landscape often defined by solemnity and medical jargon, Cheeky Charity dares to be different. By combining humor with genuine passion, vulnerability with professional execution, and individual initiative with collaborative partnership, David Russo has built something that might seem unlikely but is deeply necessary: a movement that makes it okay—even fun—to talk about colorectal cancer.

That’s not just creative advocacy. That’s cultural change.

Close to 31 million Americans have eczema. That’s roughly 10% of the population. Yet when most people think of eczema, they think of a minor rash—something temporary, something that goes away, something that isn’t serious.

They’re wrong.

“There are a lot of people who may just assume that eczema is mild. We say that we have a campaign called ‘More Than Just a Rash,’ that it’s just a rash that it’ll go away, that it’s a very temporary thing that doesn’t have lasting impacts,” explains Nora Eigenbrodt, Associate Director for Grassroots Advocacy at the National Eczema Association (NEA).

But the reality is far different for the millions living with severe eczema.

Nora talks about patients who experience sleepless nights because their itching won’t stop. Patients who have to spend hours in the bathtub because it’s the only place they get relief. Children on playgrounds being avoided by other kids who think eczema is contagious or don’t want to touch them.

The mental health impacts. The social isolation. The constant battle with insurance companies over access to treatment.

“It’s about amplifying that voice and sharing lived experiences is the best way that we have to help people understand who aren’t directly impacted,” Nora says.

This is the work of the National Eczema Association, and Nora is at the forefront of it.

Understanding the National Eczema Association

The NEA is a patient advocacy organization representing those 31 million Americans with eczema. But they’re not just focused on patients—they serve caregivers, researchers, and healthcare providers as well.

“We kind of tried to be the resource and the hub for people with eczema, for caregivers as well as for researchers and healthcare providers as well,” Nora explains.

The organization works to:

• Raise awareness about the true burden of eczema

• Improve access to care by dismantling hurdles to treatment

• Fund research to advance eczema treatment options

• Serve the whole journey, whether someone has mild eczema and just needs skincare recommendations, or has severe eczema and is navigating expensive new treatments and insurance barriers

In her role as Associate Director for Grassroots Advocacy, Nora works directly with patients and caregivers, helping them leverage their personal stories to create system-wide change, primarily at federal and state levels.

Defining Advocacy: Giving Individuals a Platform

When asked to define advocacy, Nora’s answer cuts to the heart of what advocacy really is:

“It’s taking an individual and giving them a platform.”

This is crucial. Advocacy isn’t about a professional advocate sharing their own story on behalf of patients. It’s about creating pathways for patients themselves to be heard—to have their voices amplified so they can create change at a scale larger than just their own individual struggle.

“It’s not about me going to the hill and telling my story as someone who works at NEA, but it’s about how can I find ways to be that sort of seat at the table for our patients and for our caregivers to help them be able to share their story, make their voice heard in a way that can have change that’s larger than just at the individual level,” she explains.

This reframing is powerful. Many people struggling with insurance issues or access to treatment feel like they’re fighting alone. But Nora helps them see that their individual struggle is often part of a larger systemic issue that could be solved through federal or state legislation—legislation that, if passed, wouldn’t just help them, but everyone in their situation.

The Ambassador Program: Three Tracks of Engagement

The NEA’s ambassador program, started in 2020, is uniquely structured with three tracks that work simultaneously:

Track 1: Advocacy

This is the traditional advocacy track—the ambassadors who will go to Capitol Hill, participate in virtual Hill Days, and provide testimony to lawmakers. These are the most invested, most active advocates.

Track 2: Community Engagement

Some ambassadors focus on community outreach—tabling at local fairs, working with school systems and school nurses, conducting educational activities in their communities. This work was already happening organically in communities; the NEA formalized it and provided resources and support.

Track 3: Research

This is the unique track. NEA hosts a monthly research journal club where ambassadors—some with medical or scientific backgrounds, many without—learn to read and analyze new eczema research, present it to the group, and discuss what it means.

“You have to become an expert overnight in whatever your illness is, whatever your condition is,” Nora notes. “You also have to become an expert in advocacy.”

By giving patients research literacy skills, the NEA empowers them to understand why research funding matters and to advocate more effectively for it.

The Rapidly Changing Eczema Research Landscape

Understanding the evolution of eczema treatment is key to understanding why advocacy and research funding are so critical.

Ten to fifteen years ago, eczema treatment options were extremely limited. Topical steroid creams and moisturizers were essentially the only options available.

Then, around 2017, the first biologic treatment for eczema was introduced. Since then, the field has exploded with new treatment options.

But with new treatments comes a new problem: utilization management and insurance barriers.

“That treatment might be the perfect one for you, but it might be too expensive or not covered by your insurance, or you might not be able to find a specialist that can get you in order to prescribe it,” Nora explains.

This is where advocacy becomes essential. Without patients and advocates advocating for better access policies, people won’t be able to access treatments that could dramatically improve their lives—even when those treatments exist.

Measuring Impact in Legislative Work: A Marathon, Not a Sprint

One of the most challenging aspects of advocacy work is measuring impact when legislative change takes years or even decades.

Nora points to a concrete example: the Peer Reviewed Medical Research Program (PRMRP), a Department of Defense program that provides high-impact research funding. Congress must approve a list of eligible conditions each year, but only conditions that are advocated for get included.

“It’s a totally one-to-one sort of, if you advocate for it, you have a chance. And if you don’t, in most cases researchers will miss out on that funding in your disease area,” Nora explains.

Through an educational campaign about the military service connection to eczema, NEA was successful in getting eczema on that list for FY 25 and FY 26. Now they’re measuring the impact not just by being on the list, but by whether they’re actually funding quality eczema research through that program.

But not all victories are that clean or measurable.

Congressional timelines are unpredictable. Bills have to be reintroduced. Progress can feel glacially slow. As Nora notes, “Congress is a marathon, not a sprint.”

This is why Nora redefines what “impact” means in advocacy work:

• Building eczema champions on the Hill through consistent relationship-building with legislators and their staff

• Deepening engagement with the organization itself—do advocates feel heard? Are they more empowered? Do they get involved in research or clinical trials?

• Legislative persistence—recognizing that momentum carries forward, that relationships built this year matter in year five when a bill finally passes

“Reintroducing the same legislation and inching closer to passage every session can be a frustrating experience and can be something that feels harder to measure impact,” Nora acknowledges. “So I think it has to be on multiple levels.”

The Evolution of Digital Advocacy

When Nora started at NEA three years ago, there was an ambassadors program, but no formal digital grassroots advocacy platform. She built that out.

This was crucial because not everyone wants to or can go to Capitol Hill. Building an “engagement ladder” means meeting people where they are—digitally, locally, in whatever way they can participate.

“I wanted to make sure that we were building the base of that engagement ladder and meeting people where they are,” Nora explains.

Through monthly digital campaigns around policy priorities, NEA can:

• Gauge what their community cares about

• Send action alerts and track which ones perform best

• Identify who in the digital advocacy space might be interested in stepping up to become an ambassador

• Build digital touchpoints with legislators

This data also informs their ambassador program and helps ensure they’re focusing on what actually matters to their community.

Why Patient-Centered Research Matters

NEA takes seriously what it means to do patient-centered research. When they fund research or conduct surveys and studies, they actively involve patients and caregivers.

For example, NEA recently conducted a 2025 survey on access to prescription treatments for eczema patients—an update to a 2021 study. This data directly informs their policy priorities.

“When it comes to our advocacy program and our policy priorities, they’re absolutely informed and selected by what we hear from the community,” Nora says.

This isn’t about checking a “patient involvement” box. It’s about genuinely building research around what patients experience and need.

The Bigger Vision: Regional Hubs for Deeper Engagement

If resources were unlimited, Nora’s vision for NEA’s expansion is clear: regional and state hubs.

Currently, as a small team, their reach by necessity is limited. Virtual opportunities are accessible, but many ambassadors have expressed interest in in-person events and opportunities.

Regional hubs would allow NEA to:

• Deepen engagement with ambassadors who want in-person community

• Invest more in in-state and in-district advocacy

• Build relationships with local and state legislative offices (increasingly important as the federal level gets busier)

• Support state-level legislative efforts

“Building relationships with those offices I think can be strategically very important over time to getting things done,” Nora explains.

This is the work that will happen while waiting for federal bills to move through Congress—the foundation that eventually enables larger victories.

What Advocacy Means in the Eczema Space

For Nora and NEA, advocacy has become essential because eczema is so widely misunderstood.

It’s not “just a rash.” It’s a complex, sometimes severely disabling condition that affects millions of Americans. It impacts mental health, sleep, social interaction, work, school attendance, and quality of life.

The world needs to understand this. And patients need to know that their individual struggles—the sleepless nights, the insurance battles, the social isolation—are actually systemic issues that can be addressed through advocacy and policy change.

How to Get Involved

If you or someone you know has eczema, or if you’re a healthcare provider, researcher, or caregiver interested in supporting this work, NEA is actively recruiting ambassadors.

You can learn more at: ambassadors.nationaleczema.org

The NEA offers opportunities for:

• Patients with eczema (mild or severe)

• Caregivers of people with eczema

• Healthcare providers and dermatologists

• Anyone passionate about understanding and supporting the eczema community

What Nora Wants You to Know

If you have eczema, you’re not alone. Those 31 million Americans? They’re out there, experiencing what you’re experiencing. And there’s a community working to make sure your voice is heard—not just by other patients, but by legislators, by researchers, by healthcare providers.

Advocacy isn’t something that happens to you. It’s something you can be part of. Whether that’s sharing your story, going to Capitol Hill, reading research papers, or organizing community education efforts—there’s a place for your voice.

And if you’re someone without eczema, understand this: what seems like a minor rash to you is a serious, sometimes debilitating condition for millions of Americans. When you hear eczema advocacy, it’s not about a temporary rash going away. It’s about sleepless nights, about social isolation, about access to life-changing treatments, about allowing people to live full and healthy lives.

Persistence matters. Relationships matter. Small wins build toward bigger ones. And every individual voice amplified through advocacy creates change that reaches far beyond that one person.

To learn more about turning your own health journey into purpose and impact, get your copy of From Patient To Advocate, where you’ll find resources, stories, and practical guidance for advocates at every stage of their journey.

When most people think of colorectal cancer advocacy, they might picture statistics, awareness campaigns, or calls to get screened. But for Marielle McLeod, the work goes much deeper.

Nine years out from her colorectal cancer diagnosis, Marielle has become a fierce advocate for the Latino community. Not just talking about screening, but confronting the cultural stigmas that keep people silent, suffering, and diagnosed at advanced stages.

“We don’t talk about things like these,” she explains simply. “Oftentimes as Latino patients were diagnosed automatically at later stages, and we don’t really talk about our family history just like many other cultures.”

The barriers are cultural, deeply rooted, and rarely discussed outside these communities.

“We don’t like to discuss our poop just like a lot of people do, but it’s even more so that it’s really, really gross and we just suffer in silence because we don’t have anyone that we can go to,” Marielle says candidly. “Finding the courage to go to our medical provider and say, this is really happening to me takes a lot, particularly within our community.”

This is the work of patient advocacy that nobody teaches you about in health class.

The Unspeakable Topic That Saves Lives

One of Marielle’s most powerful contributions to advocacy is her willingness to talk openly about colonoscopy prep, bowel symptoms, and all the things that most people would rather suffer in silence about.

“It’s so funny too because it’s like who would’ve thought that in our advocacy we’d be doing so many conversations in regards to butts and poop and colonoscopy prep,” she laughs. “Now it’s just second language to us and we just talk to everybody.”

She jokes that her staff gives her the side eye when she gets excited about someone getting a colonoscopy, becoming their “biggest hype girl” for the procedure. But this willingness to make the unspeakable speakable is exactly what breaks down barriers.

For communities where these topics are taboo, where discussions about private parts, sexual intimacy, or bowel movements are simply not done, having someone enthusiastically, matter-of-factly talking about colonoscopy prep can be revolutionary.

It normalizes the conversation. It makes it less shameful. It potentially saves lives.

Breaking Down Barriers Through Education

But talking about it herself is only part of the solution. Marielle’s real work is creating safe spaces where entire communities can learn to talk about these things.

“We do have a lot of work in making sure that we provide a comfortable space to have these discussions. Regardless of what language we’re doing it in, we’re discussing a lot of very intimate details and information,” she explains.

Her approach involves:

Culturally appropriate materials that don’t just educate the individual receiving them, but are digestible enough that people feel confident sharing them with others—family members, friends, community members.

Accessible language that respects both language barriers and health literacy, ensuring people understand not just the “what” but the “why” of colorectal cancer screening and awareness.

Empowerment that goes beyond information-sharing—helping people feel confident enough to ask important questions of their providers about signs, symptoms, and treatment options.

Comprehensive education that covers the full journey: screening, diagnosis, treatment options (regardless of age, access, or insurance coverage), and clinical trial options.

Biomarkers: The Critical Information Nobody Explains

One of the most important things Marielle advocates for is biomarker education—and she learned this lesson the hard way.

Despite having 20+ years of healthcare experience before her own diagnosis, when she became a patient, “it all completely flew out the window.”

When she finished treatment and stepped into advocacy, she started asking her doctors about her biomarkers. Their response? “Why do you need to know that?”

But she persisted. And she discovered she was MSS (microsatellite stable).

“I was like, well, I’m glad that wasn’t a factor in my treatment back then. Like what would I’ve done had that been what they were going to be putting me being a determining factor as to what my treatment was going to look like,” she reflects.

This is why biomarker education matters so much. Your biomarker status determines:

• What treatments you’re eligible for

• How you’ll respond to specific therapies

• Whether immunotherapy is an option

• What clinical trials match your profile

Even with a healthcare background, even with 20+ years of medical knowledge, Marielle didn’t fully understand her biomarkers until years after diagnosis. Most patients have far less medical knowledge.

And yet, most patients are never fully educated on what their biomarkers mean and why they matter.

Defining Advocacy: Giving Others Their Voice

When asked to define advocacy, Marielle’s answer reveals why she’s been so effective:

“For me, advocacy is helping others find their voice, empowering them to champion for others.”

She emphasizes that advocacy looks different for different people. Some excel at policy work. Some at clinical trial research. Some in community settings. Some in industry partnerships.

“There’s not a one size fits all, but in order for you to become a patient advocate, there’s a lot of work that goes on behind the scenes that others are not open to it or exposed to.”

More importantly: you don’t have to be a patient to be an advocate.

“You can still be an advocate regardless of what your role is, because the intention behind it is definitely that driver for you. We’re here to help others, not to elevate ourselves.”

This reframing is crucial. Advocacy isn’t about making yourself visible. It’s about empowering a community larger than yourself.

The Four Buckets of Advocacy: Finding Your Strength

Marielle aligns with the framework of advocacy having four distinct areas:

1. Awareness — This is where Marielle spends the majority of her time, helping people understand their power, their opportunities for knowledge and education.

2. Clinical Trial Advocacy — In recent years, this has become a major focus for her, working with SWOG, FDA, and DOD on clinical trial design and patient participation.

3. Legislative — She doesn’t focus here primarily, but recognizes its importance and participates in opportunities like Call on Congress.

4. Fundraising — This is the one bucket Marielle intentionally avoids. As she says, “I’m great at all of these things. You need money. You tell me, I’ll be your hype person. I’ll recruit people for you. But I was like, I can never put myself in that fundraising capacity.”

The beauty of this framework is that you don’t have to excel at everything. You find your strength and go deep there.

Clinical Trial Advocacy: Bringing Patient Voice to Research Design

One of Marielle’s key focus areas is ensuring that patients have a voice in clinical trial design from the very beginning.

“What I do currently as a clinical trial research advocate is that we bring the patient voice into the various parts of clinical trial and design,” she explains.

This includes:

• Patient reported outcomes — What quality-of-life measures and functionality benchmarks need to be tracked?

• Treatment toxicities — How do we acknowledge and prepare for the side effects patients will experience?

• Practical considerations — How often will patients need to travel for appointments? What labs and blood work are required? What barriers might patients face in participation?

• Access and equity — How do we bring trials into community centers, not just major NCI centers, so patients don’t have to travel hours or days?

One of her biggest champions is bringing clinical trials to community centers—where many patients actually receive their care.

“The data is important,” Marielle emphasizes. “A great deal of patients are being treated at community centers that don’t necessarily, by no fault of theirs, don’t have access to travel to the large NCI centers where majority of these are.”

By removing barriers to trial participation, more patients—especially young-onset patients—will be represented in research data, leading to better treatments for everyone.

Evolution: From Patient to Mentor

Almost nine years out from diagnosis, Marielle’s advocacy has evolved dramatically. She’s moved from finding her voice to helping others find theirs.

“Being almost nine years out, I have found a great strength in my voice. I am a lot more confident with not just how I share my story, but how I empower others,” she reflects.

What she’s discovered she loves most is developing talent in others.

“When I find a particular advocate that is making their way and trying to find their voice in the landscape of advocacy, I love being able to connect and empower them and share other resources with them,” she explains. “Just kind of seeing them grow from afar, sitting in the sidelines for the new generation of advocates has been completely wonderful.”

She calls herself a “jack of all trades, but queen of none”—constantly learning, adapting, and evolving as new treatments and approaches emerge. This flexibility is crucial, because the landscape of cancer care is rapidly changing. New biomarkers, new immunotherapies, new trials emerge regularly. Advocates have to keep learning to stay relevant and effective.

The Purpose That Keeps You Going

Research shows something remarkable: patients with meaning and purpose have better outcomes than patients without.

For Marielle, finding advocacy gave her that purpose during and after treatment.

“When I was going through treatment, there were days that you are very defeated. You can be the strongest person and have the hardest mental health. It is hard, and you have to decide how you show up every single day, not just for yourself, but for others,” she explains.

She kept asking herself: There has to be some purpose behind this.

And then she found advocacy.

“I was like, this is where I’m meant to be. This is what I’m going to use all this experience for.”

This sense of purpose—of using your lived experience to help others, not just yourself—is what separates advocacy that burns people out from advocacy that sustains them.

The BS Meter: Knowing Real Advocacy From Performative Advocacy

Marielle and I share something that comes from years in this space: the ability to sense when someone is doing advocacy for the right reasons versus for self-elevation.

“You could always tell the people doing it the right way, and there are people doing it the wrong way,” I noted. “I always said I had a good BS meter now.”

Marielle laughs. “Sometimes I feel a little bit cynical when my BS meter kind of goes on the upright, but I was like, no, I see it coming.”

Real advocacy is about the community. It’s about empowerment. It’s about leaving yourself out of the spotlight while shining it on the people you’re helping.

When that’s missing, people can sense it.

The Unseen Work Behind Visible Advocacy

One of Marielle’s most important points is this: there’s a lot of work going on behind the scenes that others are not exposed to.

“We do all this hard work, and I’ve loved seeing you with your book and this everyday life following those last few years because it’s true what you say. We have to dig our way up this very invisible mountain,” she tells Tim.

This isn’t glamorous work. It’s not always visible. But it’s essential:

• Research to understand community barriers

• Conversations with healthcare providers about clinical trial design

• Creating culturally appropriate educational materials

• Building relationships with legislators and industry

• Supporting and mentoring emerging advocates

• Continuously learning about new treatments and research

This is the work that happens before the awareness campaign, before the policy change, before the news appearance.

What Marielle Wants You to Know

If you’re newly diagnosed with colorectal cancer, if you’re struggling with a diagnosis, if you’re from a community where these topics are taboo:

Your voice matters. Your experience matters. Your willingness to talk about the unspeakable—colonoscopy prep, bowel symptoms, treatment side effects—can save someone’s life.

You don’t have to be perfect. You don’t have to have all the answers. You just have to be willing to share what you’ve learned.

And if you’re struggling with side effects like neuropathy (Marielle noted she can barely feel her fingertips due to chemotherapy damage), there are advocates fighting to develop better treatments that don’t cause such permanent damage.

You’re not alone. And there are people like Marielle fighting not just for survival, but for quality of life during and after treatment.

How to Connect With Marielle

You can find Marielle on:

• Instagram

• LinkedIn

She welcomes connections and conversations. As she says, “If you see me down the street or an event, just please come find me.”

In 2004, Casie Shimanski’s younger sister Kellie died at just 18 years old.

Kellie wasn’t diagnosed with cancer. But the similarities haunted Casie—the symptoms that mimicked what friends and cancer patients would later describe, the multiple organ system failure that doctors could never pinpoint to a single cause.

The loss could have ended there. But for Casie and her sister, Kellie’s death became a catalyst for action.

“My youngest sister is a marathon runner as well, so she also does a lot of fundraising for a variety of organizations, both of us working in memory of Kellie,” Casie explains.

For Casie, that purpose eventually found its way to children’s cancer research through St. Baldrick’s Foundation. But it didn’t start with a master plan.

It started with a photographer.

From Photography to Passion

In 2011, Casie was working as a photographer—weddings, families, portraiture. Through connections and what she calls “six degrees of separation,” St. Baldrick’s Foundation found her and asked if she’d photograph their fundraising event.

She said yes.

“I showed up that one event back in 2011, learned the realities of children’s cancer. I think most people go into it thinking it’s a rare thing. It’s really not that rare. Every two minutes worldwide a child is diagnosed,” she recalls.

In the time it takes to have a conversation, children are being diagnosed with cancer.

At that event, Casie watched women and men shave their heads for the cause. She watched the power of that moment. She saw two women go bald and thought: “I could do that.”

She didn’t shave that day—she was just the photographer. But something was activated in her.

The next year, she brought a friend back. In 2013, she and her dad and now-husband shaved their heads together, launching “Team Live Out Loud.”

She’d made a promise to wait until after she was married to shave her own head. A few years later, when that promise was fulfilled, everything changed.

The First Year: $600 to $200,000

Casie’s first year of fundraising brought in $600. She didn’t even shave her head that year. She was just volunteering, photographing, showing up.

“I raised $600. I didn’t even shave or cut my hair, do anything that year. I was just volunteering and photographing again. And then I think as a team, so that would be, I think we had a team of maybe five or six that year. We raised maybe 2 or 3000,” she recalls.

It wasn’t much. But it was a start. It was proof of concept. It was a spark.

What came next was 16 years of something that most people underestimate: consistency.

Every year, Casie showed up. Every year, she reminded people. Every September, she’d start the fundraising cycle again. Every January 2nd, she’d be back at it. Every March, there was a shave event.

The numbers grew: $10,000 in 2015. When Casie finally shaved 19 inches of purple hair in 2018 (just two days after her wedding), she raised $26,000.” —> the team went on to raise I think $28k+ that year. The years kept building. Now, 16 years later, Team Live Out Loud and Casie are closing in on $200,000 raised for children’s cancer research.

For eight consecutive years, Casie has been a top fundraiser for St. Baldrick’s. Her team has been a top fundraising team for eight consecutive years.

The Secret: Consistency (Not Magic)

When people ask Casie how she raises so much money, they want an easy answer. They want to hear that big checks just roll in. They want to believe in overnight success.

Casie’s answer is harder, and more honest: consistency.

“The number one question I think I’ve gotten over the years is how do you raise that much money and it’s consistency. I think people want the easy answer of I just ask people for money and it shows up. I would love for that to happen. Big checks rolling in, that would make my work a lot easier. But it’s the consistency, it’s the community aspect of it, it’s showing up, it’s doing the work, and most people don’t want to hear that. They want the easy answer and there’s not one,” she explains.

This is the unglamorous truth about fundraising and advocacy: it’s work. It’s showing up when you’re tired. It’s posting when you don’t feel like posting. It’s asking for $5 knowing that $5 is a lot of money in today’s world.

“I am actually really terrible at asking people for money specifically,” Casie admits. “But going back to 2011, Casie asking for $5 is a lot. It still is.”

Yet she asks. Because every year, people say yes.

The Strategy Behind Showing Up

While consistency is the foundation, Casie has learned specific strategies that keep momentum building:

1. Integrate It Into Your Life

Casie got married at the venue where she shaves her head. Her vows included a fundraising ask. Her honeymoon was tied into the fundraising narrative.

“I had posts that were scheduled out to go live, as we said, I do reminding people we are now married. This is a part of this whole weekend event. And just kind of, again, tying people into it that way,” she explains.

This isn’t opportunistic—it’s strategic integration. She’s not separating her fundraising life from her personal life. She’s weaving them together.

2. Build on Prior Momentum

“It is just a lot of showing up and again, sort of harnessing that energy that you built on from the year prior and every year is really different,” Casie says.

She doesn’t start from zero each year. She references previous years, reminds people of what they’ve accomplished together, and builds on that foundation.

3. Make It Feel Fun, Even When It’s Work

One of Casie’s most important insights: if you don’t make it look fun, people won’t want to participate.

But she’s clear: “I have to constantly remind people it’s not easy. I don’t just get to ask people for money and have it show up. I have to keep chipping away at it.”

There’s a balance between making something feel light and enjoyable, while being honest about the work required.

4. Use Multiple Channels

Casie combines social media content, blog writing, videos, podcasting, and one-on-one conversations. She uses email campaigns around World Cancer Day. She paints her nails orange for Children’s Cancer Awareness Month.

“Even one of the things I had my nails painted once for, I think Children’s Cancer Awareness Month, that just orange, and I had a little ribbon on one of them, and I was at a doctor’s appointment and the receptionist asked me, said, oh, I love your nails. And I said, oh, thanks. They’re for Children’s Cancer Awareness Month. And she said, oh, I didn’t realize that was a thing. And we just got into talking and I kind of shared some things, and by the end of the day, she had a hundred dollars at my link, and I didn’t even ask her for money,” Casie recalls.

You plant seeds. Some of them grow into flowers.

The Power of Shaving Your Head

One of the most visible aspects of Casie’s advocacy is shaving her head. But what does that actually accomplish?

“A lot of it is, it’s a conversation starter and it is really showing the kids that bald is beautiful,” Casie explains.

Children with cancer lose their hair from treatment. Seeing adults voluntarily shave their heads sends a message: bald is beautiful. You’re still beautiful.

“You have girls of all ages from high school to two years old losing their hair. Hair. And so showing them that bald is beautiful. It’s actually one of my favorite looks,” she says.

This is also why she doesn’t need your hair—she needs your money. The hair is symbolic. The money is what funds the research that keeps children alive.

Understanding the Need

Casie has educated herself and others about the realities of children’s cancer:

• Every two minutes, a child is diagnosed with cancer worldwide

• One in five won’t survive

• Of those who do survive, an overwhelming majority will have lifelong disabilities, disorders, or diseases

• Children are often treated with adult chemotherapy and radiation doses, even though a child’s body is smaller

• There are 27 different types of children’s cancer, many with no connection to behavior or lifestyle (kids don’t smoke, don’t drink)

• Children are treated in hospitals when they should be living normal childhoods

The research St. Baldrick’s funds is working toward safer treatments that will extend lives, not just by years, but into healthy seventies and beyond.

Defining Advocacy: Consistency With Heart

When asked how she defines advocacy, Casie’s answer reveals the philosophy behind 16 years of work:

“It’s really just showing up continuously for a cause. And usually that cause is something you’re quite passionate about, but it’s the consistency part of it. Yes, I know the facts and the stats and I can kind of rattle off numbers, but it’s the heart behind it and why it’s so important and why this cause needs attention.”

Consistency. Heart. Purpose.

Measuring Impact Beyond Numbers

While Casie tracks the dollars—nearly $200,000 toward children’s cancer research—she measures impact in other ways too:

The work itself: She puts in at least 200 hours of volunteer work almost every year. She’s done legislative work, advocated for funding, appeared at events across the country.

The quiet after the storm: There’s a pattern to her energy. She fuels it, pushes through to March, then has a “lull” where she recharges. But she always comes back.

The stories: A woman at a doctor’s appointment who saw her orange nails and ended up donating $100. People who tie their participation to major life events—anniversaries, milestones, memories.

The momentum building: Every thousand dollars funds a potentially lifesaving clinical trial. Team Live Out Loud has generated enough to fund 200 potentially lifesaving trials.

The Pragmatism of Advocacy

Casie is remarkably pragmatic about her work:

“I obviously look at the numbers. Oddly, I’m not a numbers person either, but the past 16 years have shown me that I actually am.”

She knows exactly where they stand toward their next milestone. She knew 2024 would be difficult, so she set a realistic goal of $5,000 (just to hit $200,000) instead of pushing for more. But in difficult years, they’ve still raised at least $10,000.

“I’ve had to train myself to not just assume that or not take that number for what it is, but also what I’ve put into it,” she says.

This is important for anyone considering fundraising or advocacy work: results are tied to effort. If you want different results, you need to put in different work.

The Vision

When asked what she’d like to see happen, Casie’s answer is simple but expansive:

“I would obviously love to find a cure for all of them.”

But she also knows the practical path: better science, more funding, better legislation, more research backing. She knows that every thousand dollars funds a clinical trial. She knows that if the money flowed differently in the world, they could do so much more.

For now, she does what she can—and she does it consistently, year after year, with heart and a sense of community.

How to Support

Casie’s fundraising link is active year round. Because of how she’s set it up with St. Baldrick’s, every link redirects to the current year’s fundraising page, no matter when you donate.

You can find her easily by searching her name online. Her handle is Captain Casie, and her team is Team Live Out Loud.

Whether it’s $5, $100, or more—whether it’s during the intense March fundraising push or in the quiet months after—every dollar goes toward research that keeps children alive and gives them back their childhoods.

What Casie Wants You to Know

If you’re thinking about getting involved in fundraising or advocacy work, know this:

It’s not as easy as it looks. But you can make it look easy enough that people want to participate.

Consistency matters more than dramatic gestures. Show up. Do it again next year. Do it the year after that. The compound effect of showing up is what changes outcomes.

You don’t need perfect conditions to start. Casie started with $600 and no clear plan. What she had was a cause, a willingness to try, and a commitment to show up again the next year.

People want to be part of something. They want to feel the heartbeat. They want to know their $5 matters. They want to see the work being done. Give them that, and they’ll return year after year.

Most importantly: “I need your money. The hair is a nice to have.”

Your support matters. Your consistency matters. Your willingness to show up, again and again, is what changes lives.

To learn more about turning your own health journey into purpose and impact, visit

https://frompatienttoadvocate.com

where you’ll find resources, stories, and practical guidance for advocates at every stage of their journey.

Allison Rosen was 32 years old, in the best shape of her life, when she noticed something wrong.

She had Crohn’s disease, so she was hyper-aware of her digestive system. She knew her body well. And something felt different—something unusual.

“When I would eat, I would feel like I had food stuck inside me, and eventually I would go to the restroom and eventually it was just so painful that I was like, I can’t ignore this anymore,” she recalls.

She thought it was heartburn or indigestion at first. Her doctor didn’t seem too worried. But Allison knew her body better than anyone, and she trusted that instinct. She kept pushing.

An X-ray suggested a blockage. She was sent home with magnesium citrate, told to wait it out. But the pain didn’t resolve.

Finally, her doctor agreed to a colonoscopy, even though Allison wasn’t due for one for several more months.

The colonoscopy revealed a tumor. And during recovery, the surgeon told her something that stopped her cold: If she had waited a few more months, the tumor would have broken through her colon wall. She might not be here today.

In 2012, at age 32, Allison was diagnosed with early-onset colorectal cancer.

The Double Burden of Youth and Cancer

Allison was working in cancer research at the time, blood cancer specifically. She had education about cancer, medical knowledge most patients don’t possess.

But nothing prepared her for being a patient.

“The doctors take care of all the physical stuff, but the mental aspect of going through cancer at a younger age was huge and hard,” she explains. “I felt very alone. Everyone thought my mom was the patient when we would go to the clinic. My friends that were my age were getting married, having children, and I was going to bed at eight 30 because I didn’t feel great.”

She reached out looking for support. She contacted Imerman Angels, MD Anderson’s Cancer Connection, and other organizations asking if she could be matched with someone, another young adult who understood what she was going through.

She found some support, but it was scattered. There was no dedicated young adult cancer support group at MD Anderson, one of the nation’s premier cancer centers.

So Allison made a decision: If the support she needed didn’t exist, she would help create it.

Advocacy Born From Necessity

Allison didn’t wake up planning to become an advocate. She “fell into advocacy,” as she describes it.

After completing treatment and being declared cancer-free, she wanted to find community. She went to a Get Your Rear in Gear event in Houston (organized by the Colon Cancer Coalition) and brought about 60 friends and family members with her—though she was still recovering and could only walk part of the 5K.

Someone at the event asked her to serve on an adolescent and young adult advisory council. She said yes, partly because she wanted to meet people like her.

Then she was asked to tell her story. She said yes.

Then another opportunity came. And another. Each time, she said yes.

“I never said no,” she laughs. “And so that sort of led me to where I am now involved in so many different amazing organizations.”

Her background in cancer research became an unexpected asset. Thirteen years ago, patient advocates weren’t typically part of research conversations the way they are now. Allison’s unique combination of lived patient experience and research knowledge made her invaluable to organizations working on clinical trials, research protocols, and studies.

Defining Advocacy on Your Own Terms

When asked how she defines advocacy, Allison’s answer is simple but profound:

“It’s using my voice, my story to help others improve care. So advocating for the community and the people that maybe don’t know about anything related to cancer prevention, and then the people that do.”

But there’s something else she emphasizes: You don’t need expertise to be an advocate.

“You don’t have to have the knowledge. I did. But I think it’s really important that the patient experience, caregiver experience, survivor experience are all a part of the conversation related to research,” she says.

This is critical: a lived experience expert—someone who has been through cancer treatment, someone living with cancer, someone caring for a cancer patient—doesn’t need a PhD to contribute meaningfully to research, policy, and care decisions.

The Four Types of Advocacy

Through her 13+ years of advocacy work, Allison has engaged in multiple forms:

1. Community and Patient Support

She helped create the young adult support group at MD Anderson that didn’t exist when she needed it. She still hears from people who found community, built lasting friendships, and found strength in that space.

“I met some of my best friends who are still my best friends through that support group,” she recalls.

2. Policy Advocacy

Allison noticed gaps. One gap: many young cancer patients couldn’t afford fertility preservation treatments before chemotherapy. She got involved in policy work to improve coverage. Another gap: people weren’t getting coverage for screenings and colonoscopies. More policy advocacy.

“Advocacy was where are the gaps and where can I share my story and my experience,” she explains.

3. Storytelling and Awareness

But perhaps her most powerful form of advocacy is simply sharing her story. All of it, not just the inspiring parts.

“My experience was not rainbows and butterflies. There were times that I choose not to remember, but I realized those times need to be shared,” she says.

She’s shared her story about living with an ostomy. She’s talked about the three surgeries needed to make it permanent. She’s opened up about going into sepsis three different times, about four open surgeries, about kidney issues that resulted from her treatment.

“There wasn’t necessarily mistakes, but there was knowledge that I didn’t have that if I had connected with others or if I had known the questions to ask or if I had not had fear, then I would’ve maybe not necessarily made other decisions,” she reflects.

By sharing the difficult parts of her journey, she’s helping others avoid some of the complications she experienced, or at least go into their treatment with realistic expectations.

4. Research Advocacy

“I call everyone in the community that has gone through or is going through it a ‘Lived Experience Expert,’” Allison says. “Because that’s what—after our name, it should be LEE. Lived Experience Expert. I think it should be because yeah, we didn’t get our PhD, but we were experts in our experience.”

As a research advocate, Allison brings the patient perspective to the research table. She reviews protocols, looks at inclusion and exclusion criteria, and asks the questions that researchers in a lab might never consider:

“If you say you have to go and get your blood drawn every single day for two weeks and you don’t live in that city, you can provide that perspective and say, I don’t think that will work because of cost, because of transportation, because of family, because of job.”

The Critical Importance of Being at the Table

One of Allison’s strongest messages is this: Patients, caregivers, and survivors must be involved in research from the very beginning—not as an afterthought.

“If patients, caregivers, and survivors are not at that table during the research process, these decisions are being made for us, not with us,” she emphasizes.

This is a major shift. For decades, researchers conducted studies and made clinical trial decisions without any input from the people who would be affected by them. The results: trials with unrealistic requirements, research that didn’t address patient priorities, and decisions that made perfect sense in a lab but didn’t work in real life.

“Now a lot of times it’s required to have a patient advocate as a part of a grant or when you’re looking into trials,” she notes. “But I think when you are, if you’re interested in becoming a research advocate, you must insist on being a part of the process from the very beginning because sometimes people will be like, ‘Oh, will you write me a letter?’ and you never hear anything again.”

She’s clear: patient advocates should not be a checkbox. They should be a voice. A valued contributor. A gold star, not a thorn.

The Power of Sharing Your Story

Allison’s advice to anyone considering advocacy is powerful and achievable:

“Don’t be shy about sharing your story and don’t think overnight. I think it takes time to figure out what part of advocacy you’re interested in. I think for me, it didn’t happen overnight. I told my story and it just kind of accidentally happened.”

She emphasizes that you don’t need to do something grand or public to make a difference:

“By sharing your story, even simply on social media, you can help one person. And I don’t think people really understand the impact of sharing their story, be it in a newspaper, on a blog, one post could change the trajectory of anyone’s life.”

Whether it’s a one-on-one conversation with a friend, a private message to someone newly diagnosed, a social media post, or a formal speaking engagement—it’s all advocacy. It’s all valuable.

“As long as you’re sharing in some way, if you’re comfortable one-on-one via social media, via your friends and family, you are helping people and you are an advocate,” she says.

The Gift of Second Opinions

A lesson woven throughout Allison’s story: always get second opinions. And third. And fourth.

When she was diagnosed, she consulted with three different surgeons. They all recommended different approaches to surgery.

“Really who you choose can make a huge difference in your life. And if one doctor doesn’t listen to you, go to the next. And if that one doesn’t, find someone that will listen to you because you deserve that,” she advises.

She’s also clear about a boundary: “If a doctor doesn’t respect that you want a second opinion, they’re not a good doctor.”

Knowing Your Body Better Than Anyone

An important thread running through Allison’s story is this: You know your body better than any medical professional.

Even with Crohn’s disease awareness and medical knowledge, she might have doubted herself when her doctor downplayed her symptoms. But she trusted her body’s signals.

“No matter what age you are, if you have a colon, you’re at risk,” she emphasizes. “If you think something doesn’t feel right with your bowel habits, with your eating habits, with any sort of pain, you should talk to your doctor. And that’s really what I tell people, especially younger people, that no matter what age you are, if you have a colon, you’re at risk.”

And critically: if your doctor isn’t listening, find one who will.

The Lived Experience Expert

Perhaps Allison’s most powerful contribution to the advocacy conversation is reframing who gets to be considered an expert.

In medicine and research, expertise is typically conferred through degrees and credentials. But Allison argues, rightfully, that patients, survivors, and caregivers are experts too.

They’re experts in their own experience. They understand the real-world impact of decisions made in labs and conference rooms. They know what’s actually feasible, what’s actually compassionate, what’s actually needed.

“We’ve graduated. Or we’re again graduated, people living with or have gone through. And we deserve as much of a degree of some sort for our experiences,” she declares.

It’s not just semantics. It’s a fundamental recognition that expertise takes many forms, and lived experience is one of the most important.

Find Allison Online

You can connect with Allison on:

• Instagram

• Facebook

• TikTok

• LinkedIn

Her pages are public, and she welcomes DMs and messages. Whether you need one-on-one advice, want to talk about your journey, or need a connection to the right organization, she’s available. Just search “Allison Rosen Colorectal Cancer”

What Allison Wants You to Know

If you’re recently diagnosed, in treatment, in survivorship, or caring for someone with cancer, know this:

Your story matters. Your experience is valid. Your voice needs to be heard—not just in support groups and patient communities, but in research conversations, policy discussions, and clinical trial design.

You don’t need a medical degree to advocate. You just need to be willing to share what you’ve been through.

And if your doctor doesn’t listen, doesn’t respect your questions, doesn’t take your symptoms seriously—find a new doctor. You deserve better. You deserve a healthcare team that sees you as a partner in your care, not a passive recipient of it.

Most importantly: you are an expert in your own experience. That expertise is valuable. That voice is needed.

To learn more about turning your own health journey into purpose and impact, visit https://frompatienttoadvocate.com where you’ll find resources, stories, and practical guidance for advocates at every stage of their journey.

Michael Holtz’s journey into cancer advocacy didn’t start with a cancer diagnosis. It started with a hospital PR job and a bus tour.

In 2002, the American Cancer Society was promoting Celebration on the Hill, an event designed to bring 10,000 people to the National Mall in Washington DC to demonstrate public support for increased cancer research funding. To build momentum, they created a traveling bus—essentially a “rolling billboard” that toured the country collecting petition signatures.

The American Cancer Society called the hospital where Michael was working in public relations and asked if he could help them get media coverage for the bus when it came to town.

“Of course,” Michael thought. He was a journalist by training, in PR by profession. Getting media coverage was his job.

Every outlet in town covered the bus. Three weeks later, the American Cancer Society called Michael with a job offer.

“At first I was like, it’s a nonprofit. They probably can’t pay anything,” he recalls. But they made an offer he couldn’t refuse. He spent the next 12 years there, evolving from communications to media advocacy—using communication skills and tactics to pressure lawmakers around specific advocacy initiatives at the state and federal level.

For a decade, Michael was doing advocacy work professionally. He just didn’t realize how deeply personal it would become until March 27, 2012.

The Shift From Professional to Personal

When Michael was diagnosed with stage three rectal cancer in March 2012, something changed.

The disease was no longer theoretical. It was his tumor, his treatment, his life.

He knew from his years at the American Cancer Society that stories have power. And he had something many advocates don’t: a platform, a communications background, and relationships with the media.

So with his wife Sarah’s permission and careful consideration of what his family members would want to share publicly, Michael went public with his cancer journey.

“I wanted to use my communication skills to essentially demystify what it means to be diagnosed with cancer, to go through treatment,” he explains. “I went very public with every step of my cancer journey, from diagnosis to treatment to life with an ostomy, all the things.”

In 2012, this was not the norm. Cancer, especially the intimate details of it, wasn’t something people talked about openly.

But Michael talked about it. And people listened.

The Four Pillars of Cancer Advocacy

Over 23 years of cancer advocacy work, Michael has identified four distinct forms of advocacy:

1. Awareness and Media Advocacy

This was Michael’s entry point and remains a core pillar of his work. It involves going on television, meeting with reporters, sharing your story publicly to help demystify what cancer looks like and what it means to be a survivor.

“Being the face of the disease in my community, which means sharing all aspects of it from basic awareness to the need for screening to why research is important,” Michael describes.

Because of his media relations background, local outlets consistently covered his story. He leveraged that platform to reach thousands of people with messages about screening and survivorship.

2. Legislative Advocacy

Michael has spoken before Congressional research briefings, sitting on panels with experts from the NCI and NIH to discuss what it means to be a cancer survivor and why research funding matters.

This is the work of testifying before lawmakers, meeting with Congressional staff, and using your story and expertise to influence policy decisions.

3. Research Advocacy

“While I’ve always supported increased funding for research, I didn’t always understand what the research was,” Michael admits.

Today, he’s a research advocate learning the specifics of what research is being funded, what’s happening in the lab, and how it translates to better outcomes for patients and survivors.

He serves on peer review panels like the Congressionally Directed Medical Research Program (CDMRP) and the Cancer Research Institute. In these roles, he reviews research proposals and helps determine which projects get funded—but he does it with a patient’s perspective.

“I can look at what the impact is going to be, and that always gives me excitement,” he says, noting that he doesn’t understand the specific genetic and molecular details. But he understands why the research matters.

4. Fundraising and Leadership Advocacy

Michael also serves as Chairman of the Board for Man Up to Cancer—an organizational leadership role that involves fundraising, strategic planning, and ensuring the organization serves its mission.

This form of advocacy is about building and sustaining organizations that do the work.

The Power of Leverage: Using Your Story Strategically

What makes Michael’s advocacy approach so effective is his understanding of leverage.

As a survivor with media connections and communication skills, his story has more power than most. He’s learned to leverage it strategically:

• In media: Going on local TV to share his story reaches thousands

• In legislation: Testifying before Congress puts a human face on statistics

• In research: Serving on peer review panels shapes which projects get funded

• In organizations: Leading Man Up to Cancer models vulnerability and commitment

“The stories of survivors have power,” he says. “As a survivor, as a patient, and then as a survivor, I knew that my story had more power than just me as a staffer for the organization.”

This is an important lesson for anyone considering advocacy: your lived experience gives you credibility that statistics cannot.

From Skepticism to Love: The Gathering of Wolves

Michael didn’t immediately embrace the Man Up to Cancer community. In fact, he was hesitant.

He was an eight-year survivor at the time. What could he offer to men in the middle of their cancer journey?

He attended the Gathering of Wolves retreat in 2023, expecting to observe from the sidelines.

Instead, something shifted.

“I joke that I fell in love with 110 men in one weekend, which is pretty much true. You spend that whole weekend hugging on guys and telling guys you love ‘em and learning about their stories,” he reflects.

He walked away from that retreat and told Trevor Maxwell and Joe Bullock: “Whatever you need me to do, I am on board.”

He started as fundraising director. When Trevor transitioned to a founder role, he asked Michael to become board chairman.

“I could not be happier with, and really humbled by being in this role,” Michael says.

The North Star: A Radical Audacious Goal

When asked what keeps him going after 23 years of advocacy work, Michael reveals his north star:

“The hope that we can one day, whether that’s during my lifetime or not, get to a place where kids will ask, what the heck was cancer?”

It’s a radical, audacious goal. Not just better treatment. Not just earlier detection. But a future where cancer is so rare and so manageable that future generations won’t even know what it was.

“That’s a big audacious goal, but that has for a long time been my north star of that sort of future history question,” he explains.

This goal, this far-off vision, is what sustains him through the difficult parts of advocacy work.

Tracking Progress in a Long Game

How do you stay motivated when working toward a goal that might take decades to achieve?

Michael tracks the small victories:

• People he knows and loves like you, Tim, getting to no evidence of disease through a liver transplant

• Advances in treatment and medication allowing people like Trevor to reach NED (no evidence of active disease)

• Increased screening rates and the expansion of screening methods available

• Researchers continuing their work despite federal funding cuts and political headwinds

• Changed conversations: 13 years ago, colon cancer wasn’t discussed. Today, the conversation is vibrant and ongoing.

He also participates in peer review panels for organizations like CDMRP and CPRIT, the Cancer Prevention and Research Institute of Texas, where he sees firsthand the cutting-edge research that’s happening. He meets researchers, hears about their visions for what could be possible if their projects are funded, and sees that despite the noise in the news about research cuts, “research is still happening, research is continuing, and strides are still being made.”

These moments of seeing progress keep him motivated for the long journey ahead.

The Loss That Never Stops Hurting

Advocacy work has a shadow side that rarely gets discussed: the losses.

Michael speaks about it openly:

“The longer you’re in this work, the more names you have on the back of your t-shirt of people that you’ve lost.”

One of those names is Ryan.

Michael and Ryan met at a Fight CRC Ambassador Weekend. Their friendship grew slowly at first, then “exploded” into something profound. They were inseparable when they could be together. They texted or video chatted every day. In just two and a half years, their friendship became life-changing.

Ryan was on a clinical trial when he experienced a cytokine storm—his body attacked itself and his lungs essentially froze. He died for the interest of science, pursuing research that might help others.

Michael carries Ryan’s face with him in his advocacy work. He continues the work they were doing together in Ryan’s name. He tells Ryan’s story so others can come to love him the way Michael did.

“His legacy will continue,” Michael says. “He was committed to the same work that we are. And I love that I can still tell his story.”

This is the burden of long-term advocacy: you build deep relationships with people who may not survive their disease. And you continue the work, carrying their names with you, their faces on your lanyard or name tag, their memory driving you forward.

It’s not the inspiring narrative most people want to hear about advocacy. But it’s true. And it matters.

How to Take Your First Step Into Advocacy

Michael’s advice for someone newly diagnosed or just entering their cancer journey is simple:

“Take a step, whatever that looks like.”

That step might be:

• Responding to an action alert from a cancer advocacy organization

• Signing up for a mailing list

• Attending a local support group

• Sharing your story on social media

• Calling your representative’s office

“Once you sort of take those steps, you can get more involved in your local community, in the state, in the federal government, but be open to taking that first step,” he advises.

You don’t need to have a communications degree. You don’t need to be a natural public speaker. You just need to be willing to share your story in whatever way feels authentic to you.

The Evolution of an Advocate

What’s remarkable about Michael’s 23-year journey is how his advocacy has evolved:

• Before diagnosis: Professional advocacy work on policy and media

• At diagnosis: Sharing his personal story publicly to demystify cancer

• As a survivor: Building relationships with lawmakers, researchers, and other survivors

• Long-term: Leadership roles, mentorship, carrying the stories of those lost

He hasn’t abandoned any of these forms, he’s layered them. He’s become more sophisticated, more strategic, more deeply committed.

And his commitment today isn’t to a single organization or a single form of advocacy. It’s to a north star—that future where kids won’t know what cancer was—and to the relationships he’s built along the way.

Find Michael Online

You can connect with Michael at:

• Website: michaelholtzsonline.com

• Substack: Michael Holtz Online (where he publishes regularly)

• Social Media: @michaelholtzsonline (on all platforms—Facebook, Twitter, Instagram, and more)

Michael writes regularly about his advocacy work, his cancer journey, and his reflections on building movements.

What Michael Wants You to Know

If you’re recently diagnosed or deep in your cancer journey and wondering whether advocacy could be for you, know this:

You don’t have to wait until you’re in remission. You don’t have to have all the answers. You don’t have to be comfortable being public.

You just have to be willing to take a step. And then another step. And then another.

Your story has power. Your relationships will change lives. And the work you do, whether it’s in media, legislation, research, or organizational leadership, contributes to that audacious, far-off goal: a future where cancer becomes a footnote in history.

To learn more about turning your own health journey into purpose and impact, visit https://frompatienttoadvocate.com where you’ll find resources, stories, and practical guidance for advocates at every stage of their journey.

Trevor Maxwell was 41 years old, living what he thought was a normal middle-class life with two daughters, when he was diagnosed with stage four colon cancer in March 2018.

“It was like a life asteroid,” he says. “You have one life before cancer and then all of a sudden I went from middle of my life raising a family to fighting for my life as a stage four colon cancer patient.”

But the physical battle wasn’t what nearly broke him.

It was the isolation.

Trevor began to withdraw from friends and family. He struggled with depression and anxiety. His mental and emotional burden, far exceeding the physical toll, drove him into a dark place where he felt utterly alone.

“I didn’t know it at the time, but that was actually the genesis for Man Up to Cancer,” he reflects.

He reached out for help, connecting with others through Colontown, the colon cancer community, and the Dempsey Center in his home state of Maine. But in every support space he entered, he noticed something striking:

The vast majority of people seeking help were women. The ratio was almost always three to one; women far outnumbering men.

Men, it seemed, weren’t showing up to ask for help. They were isolating instead.

Trevor realized he’d uncovered a critical problem, and as someone who’d been there, in that place of isolation and desperation, he knew something had to change.

The Birth of a Movement

In late 2019 and early 2020, Trevor launched what he called “a movement” called Man Up to Cancer.

It wasn’t a slick brand with a marketing budget. It was a call to action.

The simple message: Men don’t have to go through cancer alone.

The evidence was clear: isolation during cancer leads to worse mental health, substance abuse, broken relationships, and even worse medical outcomes. The old model, rugged individualism, handling it alone, not burdening others, wasn’t serving men anymore.

“It’s not rocket science really,” Trevor says. “If you can clearly tell men in the cancer space, ‘If you isolate during cancer, you’re going to have worse mental health, substance abuse, broken relationships, worse medical outcome,’ that’s a pretty practical appeal to them to say, you know what? Let’s rethink this.”

What started as Trevor’s personal call to action gained momentum when Joe Bullock, someone he’d met in cancer spaces, became the first major ally. Joe didn’t just listen, he became an advocate alongside Trevor.

“When I started putting it out there, this Man Up to Cancer idea, Joe was the first follower to come on board and say, this is what I want to change too,” Trevor recalls.

One voice became two. Two became many. The grassroots momentum built quietly but steadily through Facebook groups, a podcast, social media, and word of mouth, men telling other men about this community where they could actually talk about what they were going through.

How Advocacy Became Organization

What makes Trevor’s story remarkable is how deliberately he balanced the organic growth of a movement with the structure needed to scale it.

In the early days, it was pure grassroots. Men were showing up, opening up, sharing vulnerably, and offering to help each other. The community was building itself.

But when membership grew beyond a thousand people, Trevor and a core group of six men, the “OG six” as he calls them: Trevor, Joe Bullock, Don Helson, Danny Riggs, Jay Abramovich, and Mike Riehle, made a strategic decision: create structure to serve what the community actually needed.

“At the beginning it was just I saw the problem personally and I jumped into that personally,” Trevor explains. “But what you need to actually affect change in the world is people getting on board. Nothing ever changes in the world from one individual.”

They asked their members: What do you need from us? What would help?

The answer was consistent: Get together in person.

Virtual meetings helped men avoid isolation, but there was something irreplaceable about sitting with other men who understood the cancer journey in a way nobody else could. The bond forged in a room full of men all walking the same hard road couldn’t be replicated on a Zoom call.

So they created the Gathering of Wolves, an annual retreat for men impacted by cancer. It wasn’t a corporate event with keynote speakers and breakout sessions. It was men gathering to be with each other, to support each other, to remember they weren’t alone.

From that single program, Man Up to Cancer evolved into three core offerings:

1. Retreats: Annual and regional in-person gatherings

2. Chemo Care Backpack Program: Sending care packages to men going through treatment

3. Local Chapters: Connecting men at the community level across North America

Each program grew organically from the feedback and needs of the membership. Each program was structured to serve the core mission: helping men avoid isolation during their cancer journey.

What Is An Advocate, Really?

When Trevor was diagnosed, he didn’t set out to become an advocate. He was Googling “What is a patient advocate?” and stumbling through the learning curve like everyone else.

But over time, he came to see advocacy clearly:

“An advocate is someone who sees a problem or there’s some change that needs to be made to better human life, to improve, to alleviate suffering, to improve quality of life for people. It’s about serving others.”

For Man Up to Cancer, Trevor defines an advocate as “a man in our community who is willing to raise his voice or be a role model in service of that change, in changing the world so that men feel more comfortable, so that men feel okay and make it normal for a man to ask for help when they’re going through cancer.”

The advocates in Man Up to Cancer are role models.

They’re the ones brave enough to be vulnerable. They’re the men who’ve been through the darkness and come out the other side, willing to show newer patients that recovery is possible. They’re the ones standing at retreats, sharing their stories, and by their very presence saying: “I’ve been here too. You’re not alone.”

“Another word that I use interchangeably in our community for advocate is role model,” Trevor explains. “Advocates to me are role models for others who are looking to improve their lives and that can show them the way to a better life while you’re going through cancer.”

These weren’t appointed leaders. They were organic, men who showed up, opened up, and others saw in them a path forward.

Measuring Impact by Quality, Not Quantity

When Trevor talks about how Man Up to Cancer measures success, he challenges a fundamental assumption most organizations make.

“The goal for me as a founder is not about a number,” he says. “It’s not about, oh, we need to get 10,000 members or 20,000 members. If your goal in helping people is just to hit a number without it having meaning behind it, then I just don’t know what the point is.”

Instead, Trevor focuses on a single question: Is being part of Man Up to Cancer improving your quality of life?

Everything else is secondary to that.

Man Up to Cancer measures impact through:

• Surveys at the Gathering of Wolves asking detailed questions about impact and whether members would recommend the program to a friend

• Feedback forms that allow members to share their experiences anonymously or by name

• Testimonials that capture the stories of transformation

• A new digital platform (migrating from Facebook) that will allow them to gather more comprehensive data from their members

“The more information we have from our members about their experience, the better we can help them with this cause of not isolating,” Trevor says.

This approach, quality over quantity, depth over growth for growth’s sake, is refreshingly countercultural. Most nonprofits obsess over member numbers. Trevor obsesses over member experience.

“I would like to reach another thousand guys even, but we want to reach them deeply. We want them to have a meaningful experience. We want to improve their lives,” he explains. “It’s about the quality of the programs more than the number itself.”

The Unmet Need That Keeps Growing

Trevor is acutely aware that Man Up to Cancer is reaching only a tiny fraction of the men who could benefit.

There are thousands, maybe tens of thousands, of men out there right now in the same place Trevor was in 2018 and 2019: isolated, struggling with mental health, feeling lost and not knowing where to turn.

“There is a vast unmet need for men going out there who are isolated and can benefit from community and our programs,” Trevor acknowledges.

This awareness drives the vision for the next decade.

The 10-Year Vision

If resources were unlimited, what would Trevor build?

“I would like for Man Up to Cancer to be a robust, thriving international nonprofit that has chapters available so that all around the world, really, I mean primarily North America to start, but 10 years from now,” he says.

Imagine you’re a man in Indianapolis who just got diagnosed with cancer. You’re freaking out. Your mental health is deteriorating. You’re spiraling like Trevor did.

In Trevor’s vision, you would hear about Man Up to Cancer. You would know it exists. You would be able to access their services, whether that’s a local chapter, a retreat, an online community, or something that hasn’t even been created yet but emerged from what men asked for.

And you would know something critical: You’re not alone walking this road.

“There’s a group of thousands of men who are out there walking this road with them, carrying this burden with them and is going to be there for them and with them throughout their cancer journey,” Trevor says.

Whether that journey leads to a cure, long-term survival, or end-of-life care, the community is there.

“That’s the dream,” Trevor concludes. “Man Up to Cancer grows organically into that really safe space for men for the social and emotional support in the cancer journey.”

Why Men Don’t Show Up (And What Changes When They Do)

At the heart of everything Trevor built is a fundamental truth: men process trauma differently than women.

This isn’t sexism or stereotype. This is neurobiology and culture colliding. Men are socialized to be strong, independent, self-reliant. Asking for help feels like failure. Showing vulnerability feels like weakness.

But when cancer strikes, the old rules don’t apply. The disease doesn’t care about stoicism. It doesn’t respect a man’s preference to handle things alone.

What Man Up to Cancer does is create permission, and community, for a different way.

When Trevor shows up at a retreat and shares his story, when Joe Bullock and the other core members are vulnerable, when newer members see that “tough guys” can also accept help and show vulnerability, something shifts.

“It’s a bond that’s hard to describe, which because you feel it,” Trevor says of the in-person experiences. “When you’re sitting with other men who are going through cancer, who are walking this hard road with you, there’s something very, very special there.”

The Accidental Founder Who Changed the Game

Trevor didn’t wake up in 2019 thinking, “I’m going to start a nonprofit.” He was a cancer patient struggling with isolation, reaching out for help, and noticing a pattern.

He’s what you might call an “accidental advocate,” someone who saw a problem, couldn’t unsee it, and felt compelled to do something about it.

“I definitely am an accidental advocate because I started seeing a problem,” he acknowledges. “I started really getting into it and encouraging guys to not isolate, but I didn’t realize that that actually could be seen as advocacy.”

But accidentally or not, what he built has likely saved lives. And it continues to do so every single day, every time a man considering isolation instead reaches out to a Man Up to Cancer community, every time a retreat attendee goes home and continues his treatment with less despair, every time a newly diagnosed man hears from another survivor that he’s going to be okay.

The organization has grown organically from a movement into a structured nonprofit with 40 local chapters and three established programs. But it hasn’t lost what made it special: it’s still fundamentally about men serving men, leaders serving by example, and a culture that says vulnerability isn’t weakness—it’s survival.

Connect With Man Up to Cancer

If you’re a man impacted by cancer, whether you’re newly diagnosed, in treatment, a survivor, or even a caregiver, Man Up to Cancer is free.

All programs are free. Membership is free. Because they know men going through cancer are already financially devastated, and they’re committed to removing barriers.

You can learn more and join at: ManUptoCancer.org

You can also find them on Facebook, Instagram, and through their growing network of local chapters across North America.

What Trevor Wants You to Know

“Outside my family, doing this work is the passion and privilege of my life,” Trevor says.

If you’re a man going through cancer, you don’t have to do it alone. There’s a wolf pack waiting for you, thousands of men who understand exactly what you’re facing and are ready to walk this road with you.

And if you’re someone who cares about a man fighting cancer, point him toward Man Up to Cancer. The best gift you can give him isn’t advice or platitudes. It’s permission to ask for help, and a community that understands.

If you’re interested in learning more about turning your own health journey into purpose and impact, subscribe to this Substack. Subscribers will be alerted first about the upcoming release of my book, From Patient to Advocate: Turning Pain Into Impact, coming this March for Colorectal Cancer Awareness Month.

In 2005, a woman named Kristen Linquist lost her sister Suzie to young-onset colorectal cancer. Suzie had been active in the running community in Seattle, Washington, and Kristen wanted to honor her memory in a way that felt authentic to who Suzie had been.

So she started a Get Your Rear in Gear team for one of the marathons in the area.

When she moved to Minneapolis, Minnesota, she decided to bring that spirit with her and approached a local running club: “I want to do this in honor of my sister.”

That first event in 2005 was one of the earliest awareness runs dedicated to colorectal cancer in the country.

People from Texas and North Carolina saw what Kristen had done and reached out: “I saw what you did in the Twin Cities. I want to do that here.”

What started as one woman’s grief, transformed into purpose, became the Colon Cancer Coalition, now with approximately 40 Get Your Rear in Gear events across North America each year in most U.S. states and the Bahamas.

But more importantly, it became a blueprint for how advocacy can work when it’s built on community, not top-down directives.

What Advocacy Actually Means

Erin Peterson, Senior Director of Mission and Partnerships for the Colon Cancer Coalition, defines advocacy in a way that cuts through the jargon:

“For us, advocacy means empowering patients to be advocates for themselves, educating each other, educating other people and their family. Really giving patients the resources and the information that they need to make a difference in their lives and the lives of people around them.”

It’s not complicated. It’s not corporate-speak. It’s simply: help people help themselves, so they can help others.

This philosophy isn’t something the Colon Cancer Coalition imposed from above. It’s what naturally emerged from the organization’s founding.

How Advocacy Grows Organically

Here’s what makes the Colon Cancer Coalition unique: they don’t pick cities and launch programs. They wait for advocates to raise their hands.

“We don’t go out and say, ‘Hey, we don’t have an event in Orlando. We want to start.’ We have a volunteer from Orlando come to us and say, ‘I want to do this in honor of someone,’” Erin explains.

In Orlando’s case, Ashley lost a friend and wanted to do something meaningful. She reached out to the coalition. They partnered with her. The Orlando Get Your Rear in Gear event was born.

This approach, letting advocates drive expansion rather than corporate strategy, has led to something remarkable: a truly decentralized national movement where local communities own their events and their missions.

The organization’s growth isn’t measured in top-down expansion. It’s measured in the number of people raising their hands to say, “I want to do this too.”

The Evolution of a Volunteer-Led Organization

When the organization first started, it was straightforward: local event directors and their committees in each city running one event per year.

Over time, it evolved into something much broader.

“What started as our local event directors has become an embracing community for colorectal cancer people on all stages of the journey,” Erin says. “Whether it’s a newly diagnosed patient, someone currently in treatment, a multi-year survivor, caregivers who have lost people, even providers who have seen how colorectal cancer can devastate a family or community.”

The advocacy work expanded too. It’s no longer just about running events. The Colon Cancer Coalition now partners with health centers to fund screening programs, ensuring people have access to follow-up colonoscopies after positive stool-based tests. They work with providers and educators across the spectrum.

“Our advocates are who we are,” Erin emphasizes. “We wouldn’t be here without them. They are the lifeblood of who the Colon Cancer Coalition is.”

The Impossible Question: How Do You Measure Community Impact?

Every nonprofit executive knows the question: “How do you measure the impact?”

Erin gives a refreshingly honest answer: “I don’t know that I’d say we measure the impact of the advocacy program. What we do is very hard to quantify.”

She could claim X number of people screened, but that’s not how advocacy work actually functions. Instead, the coalition looks at:

• Expanding footprint: New communities wanting to join, either through Get Your Rear in Gear or other events supporting the work

• Stories and feedback: The narratives of lives changed, communities built, connections made

• Sustained engagement: Teams and individuals returning year after year, bringing new members

“People want to be a part of who we are and what we’re doing. They see the community that we’ve built, and they see the way our volunteers and advocates act together in creating a sense of community, and they want to be part of that,” she says.

This is important for everyone doing advocacy work to hear: impact isn’t always quantifiable in the moment. Sometimes it’s measured in stories, in sustained engagement, in the pull of community that keeps people coming back.

The Twenty-Year Arc: When Impact Finally Shows Up

The Colon Cancer Coalition celebrated the 20-year anniversary of the Twin Cities Get Your Rear in Gear last year (2024).

At that event, teams and individuals who had been there since the beginning showed up. People said: “This is my 18th race. I was at the first one.” Or: “This is my third. We just had someone in our family diagnosed.”

Some hadn’t missed a single event in twenty years. Others had drifted away and then returned. But they all came back for community.

And there’s something else happening that won’t be fully measurable for years:

Awareness from an early age that colorectal cancer screening is important. When a 15-year-old, 18-year-old, 25-year-old, or 40-year-old hears messages about screening from the Colon Cancer Coalition, they’re receiving education that sticks. Then, when they hit 45 and become eligible for screening, that awareness converts to action.

Similarly, when people hear early and often that “blood in your stool is not normal,” they’re more likely to get symptoms evaluated early, potentially catching cancer before it spreads, or preventing it entirely by removing precancerous polyps.

“Those messages, if we start telling people early, hopefully some of those stick around and can have a lasting impact on families and community,” Erin says.

This is the invisible impact of advocacy work: the seeds planted today that germinate into healthier choices and earlier diagnoses ten or twenty years later.

The Unique Power of a 5K Run/Walk Event

What makes Get Your Rear in Gear work so well as an advocacy vehicle?

It creates multiple layers of impact:

1. Immediate community building: Spouses who have lost loved ones, newly diagnosed patients, survivors, friends, and family all gather in one place with a unified purpose.

2. Accessibility: You can run, walk, or participate any way you want. There’s no barrier to entry other than showing up.

3. Human connection: “People that wouldn’t be connected get connected,” Erin explains. “They may only see each other every year at the race, but they have conversations standing in line at the water tent or reading a t-shirt and making a conversation. It’s really powerful.”

4. Sustained engagement: Because it’s an annual event in each community, people build the habit of returning. That consistency matters.

5. Funding for local work: Each event raises money that stays in that community to fund screening programs, education, and patient navigation services.

The Real Barriers to Screening That Money Could Fix

If resources were unlimited, Erin’s dream for the Colon Cancer Coalition would be to make screening available for everyone.

And that’s not just about the colonoscopy itself.

Most people don’t realize the barriers to screening:

• Transportation: You can’t drive yourself to a colonoscopy. You can’t take an Uber or taxi. You need someone to stay with you the entire time. If you don’t have access to reliable transportation or someone who can take time off work, you can’t get screened.

• Childcare: Someone needs to watch your kids while you’re at the appointment and during recovery.

• Work time off: You might need time off for the appointment itself, the bowel prep the day before, and recovery time after.

• Bowel prep costs: The medications used to prepare your colon for the procedure aren’t always covered. Some doctors require over-the-counter options. Some patients can’t afford the copays.

• Copays: The screening itself might have copays that low-income patients can’t afford.

• Patient navigation: There are people in clinics, not doctors, not nurses, who answer questions, schedule appointments, troubleshoot when something goes wrong. These patient navigators are crucial, and many clinics lack funding to employ them.

All of these are solvable problems. They’re not medical barriers. They’re economic and logistical barriers.

“If resources were no object,” Erin says, “I would fund all of that—transportation, childcare, time off work, bowel prep costs, copays, patient navigators. Because colorectal cancer is unique: we can prevent it from happening.”

The Prevention Story That Sets Colorectal Cancer Apart

Here’s what makes colorectal cancer different from almost every other cancer:

We can prevent it.

With a colonoscopy, we can find and remove precancerous polyps before they ever become cancer. With emerging non-invasive screening methods, we can identify adenomas early and intervene.

“Colorectal cancer has a unique opportunity to prevent all of that from happening,” Erin says. “A patient doesn’t have to go through chemotherapy, immunotherapy, and the treatment process.”

This is why the Colon Cancer Coalition’s focus on screening is so powerful. It’s not just about earlier diagnosis (though that matters). It’s about prevention entirely.

Yet many people don’t know this. Some physicians don’t even know the screening age is now 45, not 50.

Imagine if every American knew that colorectal cancer is preventable. Imagine if the message was as ubiquitous as “Get Your Rear in Gear” making it a household term.

Building Community One Race at a Time

When you go to a Get Your Rear in Gear event, you’re participating in something bigger than a 5K.

You’re joining a 20-year-old movement built by people who refused to let grief be the end of their story. You’re part of a community where spouses who lost partners can connect with each other. Where newly diagnosed patients can see that others have walked this path. Where providers can see the human impact of the disease they’re treating.

You’re also participating in advocacy work that doesn’t feel like work, it feels like community, fitness, purpose, and connection.

“It’s one of the reasons I keep doing what I’m doing,” Erin says, talking about the connections forged at these events.

What Erin Wants You to Know

If you live in a community with a Get Your Rear in Gear event, go. If you don’t, consider starting one.

If you’re 45 or older, get screened for colorectal cancer, not because you’re sick, but because screening can prevent sickness.

If you work in healthcare or public health, know that the barriers to screening often have nothing to do with medicine. They have to do with transportation, money, childcare, and access.

And if you’re thinking about getting involved in advocacy but aren’t sure where to start, remember how the Colon Cancer Coalition began: with one person who wanted to honor someone she loved, combined with a running community that already existed. The organization didn’t try to invent the wheel. It used what was already there and gave it purpose.

Connect With the Colon Cancer Coalition

If you want to learn more about the Colon Cancer Coalition or the Get Your Rear in Gear events happening near you:

• Website: coloncoloncancercoalition.org

• Social Media: Colon Cancer Coalition on Facebook and Instagram

• Email Erin directly: erin@coloncancercoalition.org

• Find your local event: Visit the website for the 40 Get Your Rear in Gear events across North America

If you’re interested in learning more about turning your own health journey into purpose and impact, subscribe to this Substack. Subscribers will be alerted first about the upcoming release of From Patient to Advocate: Turning Pain Into Purpose, coming this March for Colorectal Cancer Awareness Month.

JJ Singleton was 27 years old when he was diagnosed with colorectal cancer in September 2015. For years, he endured what most cancer patients don’t want to talk about: the relentless physical and mental toll that no amount of disease awareness campaigns seem to capture.

There was no makeup. No fresh clothes. No ESPN segment with inspiring music in the background.

There was just JJ, laying on the bathroom floor, covered in his own vomit after round after round of chemotherapy, watching professional athletes talk about overcoming adversity. He remembers thinking: nobody ever shows this part.

That moment, raw, unglamorous, and utterly honest, became the seed of a mission that would eventually transform how cancer advocacy is done in rural America.

Ten years later, JJ has become one of the most authentic voices in the cancer advocacy space, proving that impact doesn’t require polish, and that the most powerful stories are the ones we’re usually too afraid to tell.

A Life Saved by a Clinical Trial

JJ’s cancer journey followed the path that many stage four patients know too well: chemotherapy, surgery, progression. After the cancer spread through his abdominal wall and lymph nodes, he had exhausted all the approved treatment options.

A clinical trial saved his life.

But during those years of treatment, JJ lived on total parenteral nutrition (TPN), spending 23 hours a day in bed on infusions. He couldn’t eat. He couldn’t work. He could barely exist in any meaningful way.

“That was the rock bottom,” he recalls.

Mental health spiraled. The pressure to “shoulder it” as a man in rural Appalachia, to not let depression, anxiety, or darker thoughts show, nearly killed him faster than the cancer itself. Nobody warned him about this. Nobody told him it was normal or that it could be managed.

It took working on himself mentally, finding healing through community, and discovering that his story, especially the ugly parts, could mean something to other people. That realization became his exit from the darkness and his entry into advocacy.

Three Years of Saying “No” Before Everything Changed

When JJ was invited to apply for Fight CRC’s Ambassador program, he didn’t see it as an opportunity. He saw it as a formality. A way to say he tried so he could move on.

“I grew up in a small town in Appalachia,” he explains. “I didn’t think anybody wanted to hear what I had to say.”

He applied just so he could be done with it.

He got accepted.

That weekend in Missouri in 2021, when JJ and I first met at the airport, something shifted. He left that training thinking nothing would come of it. But emails kept arriving. Opportunities kept showing up. Someone asked if he wanted to join a Zoom steering committee. He said yes, not knowing what it was.

That one “yes” led to trips with major pharmaceutical companies.

That one “yes” led to partnerships with medical data companies.

That one “yes”—to something as simple as a 15-minute Zoom call—opened doors that showed him a different life was possible.

“I would tell myself that advocacy is a whole world put together,” he says of the advice he’d give his younger self. “There’s so many different avenues for it.”

Redefining What Advocacy Looks Like

When JJ first started his advocacy work, he thought it was all about fundraising. He wasn’t naturally comfortable with that approach, and he was concerned he didn’t fit the mold of what an advocate “should” be.

What he discovered is that advocacy isn’t a single lane. It’s a universe.

His focus became threefold: awareness, policy, and clinical trial advocacy. But beyond those categories, he realized his unique position, a young cancer survivor in rural Appalachia, gave him access to something most coastal, urban advocates didn’t: insight into how cancer impacts underserved populations.

Rural health disparities are real. Cancer centers are built around population centers. When you live in the mountains of West Virginia or Kentucky, you don’t have the same access to cutting-edge treatments, clinical trials, or even mental health support that someone in a major metropolitan area takes for granted.

JJ made this his mission.

While many advocates focus on policy and fundraising in visible, prestigious circles, JJ focused on something equally important: reaching the untold number of people in rural communities who would never set foot in a comprehensive cancer center.

The Courage to Share What Others Hide

One of the most striking aspects of JJ’s advocacy is his refusal to curate his story.

In a social media landscape obsessed with highlight reels, JJ posts about the bad days. He writes about suicidal thoughts. He talks about depression and isolation. He shares what it’s actually like to live with cancer, not what people want cancer to look like.

This wasn’t always well-received.

“I had pushback from people in my town,” he remembers. “They didn’t want to hear about the bad, the mental health, the suicidal thoughts.”

But he kept going. And as the culture slowly shifted, as people became exhausted by perfectly curated lives, his raw, honest storytelling resonated. What started as 20 likes on a post that terrified him to share now regularly reaches thousands of people.

But here’s what’s remarkable: JJ doesn’t do it for the engagement metrics.

“If it had 20 interactions or 2000 interactions, if it could help somebody at their darkest moment, then that means something,” he explains. “Once I accepted that, it didn’t matter. I just put out what I felt.”

This is the opposite of how most of us are taught to think about social media. It’s the opposite of how brands and influencers operate. And yet, it’s precisely this approach that has made JJ one of the most trusted voices in cancer advocacy.

The Economics of Advocacy: What Nobody Talks About

One of the most practical and important points JJ raises is something that rarely gets discussed: how do patient advocates actually afford to do advocacy work?

The romantic image of advocacy is that it’s a labor of love. And it is. But labor requires sustenance.

JJ is on Medicare and Medicaid. If he takes regular income, it can trigger benefits reviews that might disqualify him from the support he relies on. This creates a catch-22: he’s wanted by organizations, but he can’t simply accept payment without jeopardizing his health benefits.

“The biggest misconception is either you do it all on your own or you get paid for everything,” JJ says. “Neither is true.”

What works for him, and what he advocates for, is creative compensation:

• Travel reimbursement doesn’t count as income for disability benefits, so covering flights, hotels, food, and transportation means he can afford to participate.

• Smaller companies often offer gift cards or other non-cash compensation for consulting on projects.

• Larger organizations can donate to the advocacy organizations he represents, which then provide him travel support.

• Contractors are willing to work with you if you explain your situation. They want your expertise as a patient; most will find a way to compensate you ethically.

“They’re wanting to help because they want the information that you have as a patient and as an advocate. Most of the time they’re willing to help in whatever way possible,” JJ explains.

For anyone considering advocacy work while on disability benefits, this insight is critical. You don’t have to choose between financial stability and meaningful work. You just need to be transparent about your constraints and creative about solutions.

Why Companies Actually Care What You Think

JJ sits on multiple steering committees with major pharmaceutical companies. He watches how organizations use (or ignore) patient feedback. And he’s noticed a clear trend: the ones who listen get better outcomes.

“If they’ve actually listened to the patient and used their ideas and suggestions throughout the process, you can tell,” he says. “And if they haven’t, you can tell immediately. And that’s an automatic turnoff.”

But why do companies suddenly care about patient perspectives after decades of running things without them?

Trust. And necessity.

COVID shifted the ground. Patients’ trust in institutions fractured. Companies realized they needed patients not just as data points, but as partners and validators. Some of the largest pharmaceutical companies only started expanding their patient advisory committees after the pandemic, companies that previously had minimal patient input.

“They realize if they listen to our voice, that’s going to bring the newer patients,” JJ explains. “They’re going to be able to tell that we do put y’all first.”

This is still in the early stages. Patient-centered research and drug development remains a small percentage of the overall ecosystem. But the momentum is there. And advocates like JJ are helping pull organizations toward a model where patients aren’t an afterthought, they’re partners.

The Long Game: How Change Actually Happens

Legislative advocacy. Policy work. Research transformation. These things take time.

JJ knows this firsthand. He’s been advocating for a decade. Some of the policy work he’s involved in has had “minute victories,” small wins that seem almost insignificant in the moment.

But here’s what keeps him motivated: he can see the difference.

When JJ was diagnosed in 2015, the colorectal cancer screening age was 50. It’s now 45. Immunotherapy was just beginning to be explored for colorectal cancer when he was sick; now there are multiple options. The treatment landscape has transformed.

New patients today are getting options that didn’t exist when JJ was fighting for his life. They have more clinical trials available. They have better support systems. They have more drugs.

“I could see the whole process of everything our organizations and companies have been doing over a decade. How many more drugs are available, how much more support is there for cancer care in general,” he says. “That’s why I’ll never quit now because I’ve lived in a whole decade and I’ve seen the difference.”

This perspective, seeing the forest instead of just the individual trees, is what separates burnout from sustainability in long-term advocacy work.

Writing Like Your Life Depends On It (Because For Someone, It Might)

JJ writes consistently on social media. Not for metrics. Not for book deals. Not for validation.

He writes because he knows that somewhere, someone in their darkest moment is reading his words at exactly the moment they need to hear them.

When he first started, engagement was minimal. A few people liked his posts. Some people in his community actively discouraged him from sharing about depression and mental health. It would have been easy to stop.

But he kept going, because he had made a decision: he wasn’t going to let the number of likes determine the value of the message.

“Once I accepted that it didn’t matter if it had 20 interactions or 2000, if it could help somebody at their darkest moment, then that means something,” he reflects.

Today, his writing reaches far more people. But his approach hasn’t changed. He’s not chasing viral moments. He’s practicing a different kind of impact, the kind you can’t always measure.

What’s Next: The Vision for the Next Five Years

When asked where he sees his advocacy work heading, JJ outlines clear goals:

1. Better policy implementation - “Adapted and continuing to grow,” with meaningful change, not just token action.

2. Clinical trial transformation - More focus on accessibility, resources, and availability. Clinical trials are still conducted using decades-old processes; JJ wants to see that modernized and made more accessible, especially in rural areas.

3. Continuing on the frontline - Staying involved in research advocacy and helping shape how clinical trials are designed and executed.

4. Youth engagement - Continuing to reach young patients in the colorectal cancer space and across cancer types.

These aren’t modest goals. They’re the kind of work that takes sustained effort, partnership, and patience. But JJ has learned that patience paired with consistent action equals progress.

One Last Piece of Advice

If you’re listening and thinking, “I want to do what JJ does,” here’s what he wants you to know:

Do it. Even if it makes you uncomfortable.

You don’t need to be a natural public speaker. You don’t need to have all the answers. You don’t need to fit the mold of what an advocate “should” be.

What you need is authenticity. Consistency. And the willingness to say yes to opportunities that scare you.

“You don’t realize how much the community and what you’re doing will improve you as a person and your life,” he says. “I’ve met my very best friends through advocacy, and I’m a better person. And that helps me continue to do the work that’s improving the world too.”

Where to Find JJ

You can find JJ Singleton on Instagram or any social media platform by searching “JJ Singleton.” That’s where he shares updates, articles, videos, and the real, unfiltered story of what it means to be a young cancer survivor turned advocate in rural Appalachia.

Starting in 2026, he’s hitting the road with a full schedule of advocacy work and travel. If your path crosses with his at an event or conference, take the opportunity to say hello. You’re likely to meet someone who has genuinely changed the landscape of cancer advocacy. One honest post, one difficult conversation, and one “yes” to opportunity at a time.

If you’re considering advocacy work but unsure where to start, JJ’s story is a roadmap. It shows that impact doesn’t require a perfect story or a major platform. It requires showing up as yourself, sharing what others won’t, and saying yes to the opportunities that scare you.

And most importantly: it shows that clinical trials aren’t a last resort. They’re a critical part of the treatment landscape. If you’re facing a cancer diagnosis, talk to your provider about clinical trials from day one—not as a Hail Mary, but as part of a comprehensive approach to your care.

If you're interested in learning more about turning your own health journey into purpose and impact, subscribe to this Substack. Subscribers will be alerted first about the upcoming release of From Patient to Advocate: Turning Pain Into Purpose, coming this March for Colorectal Cancer Awareness Month.

Defining Advocacy: It’s More Than You Think

When asked to define advocacy, most people think of policy work or congressional lobbying. But Anjee describes it as existing on a spectrum, with multiple valid entry points for engagement. “I think people define advocacy differently,” she explains. The first step might be as simple as sharing your story as a survivor and encouraging others to seek screening or information about treatment options. That’s advocacy.

But for some people, the desire goes deeper. They want their story to drive tangible change. That’s when they might transition into policy advocacy—engaging members of Congress, talking to local leaders, pushing for legislative action. And then there’s a third category: research advocates who are passionate about the science itself and work to guide clinical trials, review grant applications, and advance patient perspectives within the research community.

Fight CRC intentionally cultivates all three types. As Anjee says, “For our organization, we really want to empower people to move through the awareness into taking action.” The key is recognizing that not every advocate needs to be at the Capitol steps—but every advocate matters.

Breaking the Stigma: How One Campaign Changed Everything

When Anjee first began working in colorectal cancer 20 years ago, she encountered a problem that few people outside the community understand: patients were ashamed to talk about their diagnosis. Support groups for breast cancer, prostate cancer, and other cancers would be packed. Colorectal cancer support groups? Empty. When nurses asked why, the answer was clear: embarrassment. People didn’t want to admit they had cancer of the colon. They’d rather just say “cancer” and leave it at that.

This stigma became a barrier to everything—screening, advocacy, research participation, even community support. So Fight CRC launched a campaign called “1 Million Strong,” centered around something unabashedly colorectal: the selfie. But more than that, it was about giving patients a story they could be proud of. The campaign celebrated survivors as strong, hopeful, resilient, and beautiful. Critically, it also made space for people to talk openly about the disease—to say “poop,” to say “fart,” to normalize the conversation in a way that felt liberating.

“Over the last 20 years I’ve seen that change,” Anjee reflects. “There’s no certain look or feel to a colorectal cancer survivor.” Today, colorectal cancer advocates openly discuss their condition in the halls of Congress. Tim McDonald recalls going to a Florida representative’s office and explaining why colorectal cancer was the only top-five cancer killer without dedicated funding: “Breasts are kind of sexy to talk about. Nobody wants to talk about their shit.” The staffer loved it—and more importantly, the conversation shifted from shameful whisper to honest dialogue.

The Proof is in the Numbers: Measuring Long-Term Impact

One of the most difficult questions for any advocacy organization is: How do you measure success? Unlike corporate quarterly reports, advocacy impact unfolds over years and decades. But Fight CRC has found a way to demonstrate their effectiveness.

When Anjee dug into the historical data, she discovered a clear correlation: as the number of advocates going to Capitol Hill increased, so did federal funding for colorectal cancer research. They started with four people heading to Congress. Then 20. Then 100, then 200, then 300. Each wave of advocates resulted in more funding flowing from the Department of Defense budget and the National Cancer Institute to colorectal cancer initiatives.

But the impact goes beyond dollars. Fight CRC helped secure passage of the colonoscopy loophole bill—legislation that ensures patients have access to follow-up colonoscopies without facing unexpected bills. This alone has removed a massive barrier to care for thousands of patients. Yet this victory didn’t happen overnight. “It took us 10 years to get the colonoscopy loophole bill passed,” Anjee notes. This is the essence of advocacy as a marathon: the willingness to show up year after year, building momentum until change becomes inevitable.

Anjee emphasizes: “If someone had said, oh, you shouldn’t do it in year one because you didn’t move it forward, we wouldn’t have had that passed.” Long-term advocacy requires faith in the process and resilience in the face of slow progress.

From Storytelling to Science: The Three Paths of Advocacy

What makes Fight CRC distinctive is recognizing that not all advocates want to do the same work. Tim McDonald embodies this beautifully. He started as an ambassador sharing his story. He then became a policy advocate, heading to Washington DC to push for legislative change. Most recently, he’s become a research advocate, diving into the science and helping guide clinical trials and grant applications.

“You’re like the model advocate,” Anjee tells him. “You started with sharing your story and then started to push for legislation and then really got into the science.” But critically, Tim didn’t have to know from day one which path he’d take. Fight CRC introduced him to the different ways of engagement and let him discover his passion organically.

This three-tiered approach creates a robust advocacy ecosystem. Some advocates are brilliant at social media and digital storytelling. Others are policy wonks who live for legislative battles. Still others are scientifically minded and want to ensure research reflects patient priorities. A thriving advocacy organization needs all three.

The Reality Check: Staying True to Your Mission While Securing Funding

Running a nonprofit advocacy organization brings unique pressures. Funders want to see measurable outcomes. They want to know their money is being used effectively. But there’s a tension: what funders want to measure isn’t always what actually drives advocacy impact.

Anjee addresses this honestly and directly. “You got to say no, right? You can’t just take money and not have the transparency for both the funder and for yourself as an organization to be like, ‘Hey, we’re not aligned.’”

Rather than let funders dictate metrics, Fight CRC developed the Colorectal Cancer Care Report, a data-driven document that outlines evidence-based goals for the community. They set specific targets: 80% colorectal cancer screening for all eligible individuals. For patients who test positive on non-invasive screening, access to colonoscopy within 90 days (because data shows that without this follow-up, patients often disappear from the healthcare system entirely). Treatment access within six weeks. 80% of eligible patients receiving biomarker testing and genetic testing.

“The data was driving our decision on those numbers,” Anjee explains. This approach has been transformative because it allows Fight CRC to tell funders: “Here’s what we believe in, and here’s the evidence supporting it. Are you aligned with this vision?” It puts the organization in control of its mission rather than letting money dictate priorities.

This is rare in the nonprofit space—and it’s a model more organizations should consider.

The Dream: Removing Financial Barriers to Advocacy

When asked what she’d do with unlimited resources, Anjee’s answer is both simple and profound: “I would love to be able to scholarship any survivor who wants to go to Washington DC to share their story.”

Right now, the cost of traveling to DC for March Colorectal Cancer Awareness Month keeps many advocates away. Some can’t afford the flight, hotel, and meals. Some can’t take time off work. Some simply don’t have the financial means. But Anjee knows from Tim’s mentorship of new advocates that demand is there—and that the impact would be transformational.

“It would be magical,” she says. And Tim confirms it: “I know it would be probably double in a year if you would just open that up to anybody that wanted to go without having to worry about the funds to be able to get there.”

Removing financial barriers to participation in advocacy isn’t just nice—it’s transformative. It democratizes the advocacy space, ensuring that advocacy isn’t limited to people with resources, but is truly open to anyone with a story to tell and a desire to drive change.

The Journey: From Embarrassment to Empowerment

What stands out most in Anjee’s leadership of Fight CRC is her deep understanding of where the community started and how far it has come. When she joined the organization, advocacy work felt intimidating to many patients. They’d just been diagnosed, they were processing trauma, and suddenly they were being asked to talk to policymakers and researchers. It felt like too much.

So Anjee intentionally made the entry point lower. Tell your story first. Get comfortable. Build confidence. Then, if you want to, move into policy work or research advocacy. By creating a welcoming on-ramp rather than a daunting barrier, Fight CRC transformed thousands of patients into advocates.

The colorectal cancer community went from being too embarrassed to even acknowledge their diagnosis to proudly declaring themselves “1 Million Strong.” They went from empty support groups to packed advocacy events. They went from being invisible in policy conversations to being the driving force behind major legislative victories.

And they did it not through a single dramatic moment, but through a marathon of consistent effort, authentic storytelling, and unwavering commitment to the mission.

How to Get Involved

For anyone interested in joining the colorectal cancer advocacy community, the path forward is clear. Visit fightcrc.org to learn more about Fight CRC’s programs and initiatives. They’re active on Instagram, Facebook, and X. March is Colorectal Cancer Awareness Month, and every year brings an opportunity to get involved—whether that’s raising awareness in your community or traveling to Washington DC to share your story directly with policymakers.

If you’re interested in learning more or want guidance on how to get started, consider reaching out to someone like Tim McDonald, who serves as a mentor for new advocates heading to the Capitol. The advocacy community is welcoming, and there’s a role for every skill set and comfort level.

Final Thoughts

Anjee Davis’s leadership of Fight CRC demonstrates something critical about advocacy in healthcare: it’s not measured in quarterly earnings or immediate legislative victories. It’s measured in lives saved through increased screening. It’s measured in the courage it takes for a patient to stand in front of a member of Congress and say, “This matters to me.” It’s measured in a community that went from silent shame to unified voice.

The most powerful advocacy isn’t about having the loudest voice or the biggest budget. It’s about showing up, consistently, with your authentic story, year after year, until the systems that need to change finally listen. That’s the marathon that Anjee and Fight CRC have been running for years—and it’s working.

When Liz Healy was hit by an out-of-control skier on a Vermont mountain in February 2022, she had no idea that a broken tailbone would lead to a diagnosis that would redefine her life. The imaging revealed kidney cancer—but that was only part of the story. When she consulted with four different surgeons in the New York City area, the fourth doctor at Memorial Sloan Kettering Cancer Center saw something the others had missed: stage four colorectal cancer that had spread to her liver and lymph nodes.

At 45 years old, colorectal cancer wasn’t on her radar. Neither was the 10-hour emergency surgery to resect her colon and liver, or the hepatic arterial infusion pump that would be placed to fight a disease that had already metastasized. With an initial 7% chance of living five years, Liz faced not just a medical battle, but a profound question: What does it mean to live when you’ve been told you might not?

Three and a half years later, Liz has not only defied those odds—she’s built an entire mission around turning her pain into purpose through advocacy.

What Does Advocacy Really Mean?

When asked to define advocacy, Liz doesn’t offer a simple answer. She talks about layers—about the essential work of being your own health advocate, learning everything you can about your disease, and advocating for family members as a caregiver. But then she goes deeper.

“Advocacy is turning pain into purpose,” she says. And for Liz, that purpose emerged from shock.

In the first six to nine months after her diagnosis, Liz was in survival mode. The mental, physical, and emotional toll of treatments like FOLFOX and managing an infusion pump consumed her days. She wasn’t thinking about raising awareness or inspiring others—she was focused on living through the next round of treatment.

Everything shifted when Colontown invited her to attend the Cologuard Classic in Tucson, Arizona, a colorectal cancer advocacy event and golf tournament for the Champions Tour. There, for the first time, Liz met others who had been fighting colorectal cancer for years. She met people who showed her that life after a stage four diagnosis wasn’t just about surviving—it was about fighting strategically, finding hope, and building community.

That weekend planted a seed. Within months, Liz wasn’t just receiving support—she was giving it.

The Four Pillars of Her Advocacy

1. Movement as Medicine

For four years, Liz has channeled her lifelong athletic passion into fundraising and awareness campaigns. She’s run the New York City Marathon for Fred’s Team at Memorial Sloan Kettering, raising money for colorectal cancer research. She’s done half marathons for the Colorectal Cancer Alliance, climbed mountains for Climb for Cure with Fight CRC, and participated in Cycle for Survival.

What makes this remarkable isn’t just the physical feat—it’s that she’s done most of it while undergoing cancer treatment.

“I may go out to a mile, under two-five, may do 26.2, but whatever it is, it’s a win given what our family is facing,” she explains. But it’s more than a physical achievement. These events fill what she calls her “fight tank”—the psychological and emotional fuel that keeps her going through the darkest days.

This year, she ran the NYC Marathon with a team of 20 people whose lives have been touched by colorectal cancer: stage four patients, caregivers, family members, and friends. They’re targeting 40 runners next year.

2. Sharing Your Story Can Save Lives

Before her diagnosis, Liz was a private person—not on social media, not one to overshare. She was a global executive at IBM and Deloitte, traveling the world, too busy to prioritize medical checkups. She was exactly the kind of person who would skip a colonoscopy because she “felt fine.”

Now she understands the power of telling her story.

“If sharing a little bit of my story can change someone’s mindset—someone like me who says, ‘Oh, I feel okay, I don’t need to go to a doctor’—that gives me something I can do to save one life and one family from going through this,” she says.

She’s learned that awareness isn’t just about statistics or medical facts. It’s about connection, about hearing from someone you relate to that a simple screening could have changed everything.

3. Advocating for Research and Clinical Trials

With two different types of cancer from completely different primary tumors, Liz faced a reality that most patients don’t: finding a clinical trial that could help her was extraordinarily difficult.

But she’s learned something crucial that she now advises other stage four patients: don’t wait until your treatment options are exhausted to start researching clinical trials. Start immediately.

“95% of the trials I’ve been researching, I’ve learned from other advocates that I shouldn’t wait until I’m out of treatment options to look for a trial,” she explains. “Look for it now, especially if you’re stage four.”

This year, she enrolled in a clinical trial at Mass General for her unique situation. While it ultimately didn’t deliver the results she hoped for, she participated knowing that the knowledge gained from her journey could help others. That’s the broader mission of research advocacy—understanding that your participation in a trial isn’t just about saving your own life, but about contributing to science that could save countless others.

4. Serving on Boards and Building Institutional Change

Liz comes from a lineage of service. She attended the Ursuline School in New York, where the motto is “I will serve.” She was captain of the women’s crew team at Cornell University. Throughout her corporate career, she struggled with a tension: she wanted to dedicate herself fully to service work, but she also saw the power of corporations to influence and fund change.

When she was diagnosed, a gift emerged from years of careful financial planning: she had the security to step back from her demanding executive role and focus on service.

Now she serves as a patient advisor with the Colorectal Cancer Alliance, a board member of Sky Hope Angel Flight (an organization that helps medical patients fly to treatment), and a team captain for multiple fundraising initiatives. She and her family are ambassadors for Fight CRC. She fundraises for Camp Kesem and Inheritance of Hope, organizations that care for children of patients with terminal cancer.

She’s transformed what could have been time stolen from her into time given to others.

The Gift in the Grief

What strikes you most when listening to Liz speak about her journey is not despair, but gratitude. Yes, she’s fighting stage four cancer. Yes, the cancer has spread to her lungs, bones, brain, liver, lymph nodes, and glands. Yes, she’s living with brain swelling that has paralyzed her vocal cords, making her voice sound different from the “booming loud Irish woman voice” she’s known for.

But she speaks of cancer as a gift.

“Advocacy is a path of service and giving back to the world,” she says. “It’s a beautiful gift that cancer has given me. It’s something that I always wanted more in my life, and it only took a little bit of stage four cancer to get to it.”

Every good day is an opportunity to put her energy into helping the organizations that saved her life and gave her hope. The Colorectal Cancer Alliance. Colontown. Fight CRC. Memorial Sloan Kettering. These institutions didn’t just treat her—they showed her that she wasn’t alone, that her life had meaning beyond her diagnosis.

And now, by serving them, she’s ensuring that the next person who receives a stage four diagnosis will have the same community waiting for them.

What We Can Learn From Liz’s Story

Liz Healy’s journey offers several lessons that extend far beyond the cancer community:

Be your own advocate. Don’t assume doctors will catch everything or that you know your body well enough. Get smart. Ask questions. Get second, third, and fourth opinions if something doesn’t feel right.

Your story matters. You don’t have to be a professional speaker or writer to make an impact. Sharing your truth—especially the parts that scare you—can change someone else’s life.

Start early. Whether it’s clinical trials or screening, don’t wait until you’re out of options. Research now. Plan ahead. Give yourself every advantage.

Find your movement. For Liz, it was running marathons and climbing mountains. For others, it might be different. But whatever fills your fight tank, whatever gives you a sense of control and hope—pursue it relentlessly.

Turn pain into purpose. You can’t choose what happens to you, but you can choose what you do with it.

Liz Today

As of this recording, Liz is continuing to fight. She’s looking for clinical trials that might offer a “Hail Mary” chance. She’s living with the knowledge that having cancer in her brain means every day is uncertain. But she’s also living with purpose, with community, and with the profound knowledge that her life has meant something to others.

Every marathon completed. Every story shared. Every person she’s mentored through their own cancer journey. Every family she’s helped secure resources they needed.

That’s not just surviving stage four cancer. That’s transcending it.

Liz Healy’s story is one of resilience, but more importantly, it’s a story about choosing service when you’ve been handed circumstances that would justify despair. If you or someone you know is facing a cancer diagnosis, organizations like the Colorectal Cancer Alliance, Colontown, and Fight CRC offer community, resources, and the kind of hope that Liz discovered can literally save lives.

Listen to the full conversation on the Advocacy at Work podcast, where Tim McDonald and Liz dive deeper into the specifics of her journey, the clinical trial process, and what advocacy has meant in her fight against cancer.