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.

The fluorescent lights of the Miami Beach conference center cast the same warm glow they had the year before. Different hotel, same ocean breeze drifting through the lobby, same branded banners announcing Allycon, the Colorectal Cancer Alliance’s annual gathering. The same buzz of conversation filled the halls during breaks. But this year, the spaces between those conversations felt heavier. Chairs that should have been filled sat empty, their absence louder than any keynote speech.

In a community like ours, loss is always present. I know many others were grieving people who should have been there, people whose absence they felt just as keenly as I felt mine. But for me, three losses hit particularly close. Two friends had died in the months leading up to the conference. Another couldn’t make the trip, her health declining in ways we all understood but nobody wanted to name out loud. As I moved through the weekend, introducing myself to new advocates and reconnecting with familiar faces, I kept catching myself looking for people who weren’t there. People who wouldn’t be there again.

It’s been five years since I started down this path. Back then, I didn’t even call it advocacy, I told people I was just “creating awareness,” as if that semantic difference somehow made it less intimidating, less official. I was new to this world, learning the language, figuring out how to tell my story in ways that might help others tell theirs. I looked up to the veteran advocates, the ones who seemed to have it all figured out, who could navigate these spaces with confidence and purpose.

Somewhere along the way, without me quite noticing, something shifted.

Now people ask me questions. They want to know how I got started, how I balance advocacy with work, how I keep going when it gets hard. They introduce me to others as someone who “does amazing work” or who “they should really talk to.” The role I’ve been playing has changed, and I’m not entirely sure when it happened. I’m no longer just looking up to others. Others are looking up to me.

That realization hit me hard in Miami Beach, maybe because it arrived alongside grief.

As I shared my feelings about the losses with people I was meeting for the first time, I kept returning to a thought that helped me make sense of it all: if I’m going to be upset that cancer took these people from me, then I have to acknowledge that cancer is also what brought them into my life in the first place. It’s an uncomfortable truth, one that doesn’t resolve neatly or make anything fair. But it’s true nonetheless.

I am grateful for the time I got to spend with them. For the conversations that ranged from the deeply practical to the beautifully absurd. For the lessons they taught me, sometimes intentionally and sometimes just by how they showed up in the world. For the way they made me laugh when I needed it most, and made me think when I would have preferred not to.

This gratitude doesn’t make the loss easier. Let me be clear about that. The grief is still sharp. The holes they left behind are still there. But acknowledging this paradox—that the same disease that took them is also what connected us—helps me process the loss quicker and in a way that feels healthier for me. It lets me hold both truths at once: that I miss them terribly, and that I’m grateful we had the chance to know each other at all.

Five years into this work, I’m learning that advocacy isn’t a linear journey from novice to expert. It’s more like a spiral, where you keep passing the same landmarks but from different vantage points. The questions don’t really change. How do we help? How do we honor those we’ve lost? How do we keep going? But the perspective shifts. What you once looked up to see, you now look across at, or find yourself helping others look toward.

I think about the newer advocates I met in Miami Beach, the ones just starting to tell their stories, just beginning to figure out what their version of this work will look like. I see myself in them from five years ago. And I realize that part of my role now is to be for them what those veteran advocates were for me: someone who shows that this path is walkable, that the work matters, that the community will hold you even when, especially when, it has to hold your grief.

The empty chairs were a reminder that advocacy in the cancer space is always shadowed by loss. Everyone there was carrying their own grief, missing their own people. We advocate alongside people who are sick. Some get better. Some don’t. We form friendships knowing that time might be limited, that every conversation could matter more than we realize in the moment. And still, we show up. We keep building these connections, knowing full well what we might lose.

Because the alternative—not connecting, not building community, not learning from each other—would mean letting cancer take even more from us. It would mean letting it isolate us in addition to everything else it does. And I refuse to give it that power.

So yes, I’m shifting into a new role. One where I’m no longer just learning from others but helping others learn. Where my five years of experience, still modest in the grand scheme, might be exactly what someone needs to take their first steps. Where the lessons I learned from those who are gone get passed forward, kept alive in how I engage with those who are just beginning.

The grief comes with the territory. So does the gratitude. And somehow, holding both of those things together feels like the most honest way to honor everyone who’s been part of this journey—those who are still here, and those who aren’t.

Cancer brought them into my life. I’ll never stop wishing it hadn’t. But since it did, I’m going to make damn sure their impact continues, that the connections we built keep growing through the community we’re all still building together.

That feels like advocacy too. Maybe the most important kind.

Understanding Advocacy: Two Sides of the Same Coin

When Amy defines advocacy, she describes two equally important approaches. The first is personal advocacy: being your own best advocate, or supporting a friend or family member in navigating healthcare, encouraging them to seek quality care and have meaningful conversations with providers. This is the foundational work that builds individual empowerment.

But the second type—policy advocacy—operates at a different scale. It’s about identifying systemic barriers to access and pushing for legislative solutions that can help not one patient, but millions. “If you’re so fortunate to have those successes, you’re not just helping a patient one at a time, you’re now in a situation where you can potentially help millions of people improve their care, and that’s really impactful and meaningful,” Amy explains.

Both matter. Both require commitment. But they work on different timelines. Personal advocacy can yield immediate results. Policy advocacy? That’s a long game.

The Long Game: A Decade of Advocacy That Finally Paid Off

The PAN Foundation didn’t start with policy advocacy in mind. Founded in 2004, the organization focused entirely on financial assistance—providing grants to help uninsured and underinsured patients access medications. It was vital work. Over nearly 20 years, PAN has helped 1.3 million people access the care they need, providing more than 4.5 billion dollars in financial assistance across 80+ different programs spanning oncology, chronic diseases, and rare diseases.

But when Amy arrived as Director of Alliance Development in 2014, she began asking a crucial question: “Why aren’t we doing more?”

The organization had the relationships, the expertise, and most importantly, hundreds of thousands of patients with lived experience of access barriers. Why not channel that into advocacy work? The answer wasn’t obvious to everyone—including the board.

“We had some board members who said, ‘waste of time, waste of resources. You’re not going to change anything. Why bother?’” Amy recalls candidly. It took education and persistence, but eventually the board agreed to let her build an advocacy program from scratch.

What followed was a deliberate, strategic expansion. PAN started with position statements outlining the organization’s stance on key issues—carefully vetted and board-approved topics that aligned with their mission. They moved to issue briefs, though Amy admits “I don’t think anyone read them.” Eventually, they engaged a government relations firm to help them focus their efforts on specific legislative priorities and began meeting with Congressional offices to introduce PAN and its mission.

But the real turning point came when Amy realized: we need to engage advocates more directly. That’s when PAN’s advocacy program truly transformed.

Building a Movement: From Position Statements to Patient Stories

Today, PAN’s advocacy work operates on multiple levels, each designed to amplify patient voices in different ways.

The centerpiece is their Advocacy Action Summit (formerly called Hill Day), an annual event bringing advocates to Washington DC to meet directly with policymakers. It started small—40 people the first year. Last year, when Tim McDonald participated, it had grown to 65 advocates. This year? 85. “When you’re in a room with 85 advocates who are telling their own story and are so passionate, it’s quite moving,” Amy reflects.

But recognizing that not everyone can travel to Washington DC, PAN created a complementary approach: their grassroots advocacy platform. This digital tool makes it easy for patients anywhere in the country to engage their representatives. Activists can personalize and send messages directly to members of Congress with a few clicks.

The impact has been striking. When PAN launched their “Healthcare is at Risk” campaign in response to threats to Medicare, Medicaid, and federal research funding, nearly 10,000 messages were sent to Congress in just six weeks. Most remarkably, about 50% of those individuals took time to personalize their messages and share their stories. “It says a lot—people are concerned,” Amy notes. “And so we’re grateful that we are able to give advocates a platform to do that because I think oftentimes advocates, individuals don’t know how can I help and is it really going to make a difference?”

Beyond these initiatives, PAN is formalizing an ambassador program—recruiting advocates in every state to serve as ground-level representatives of PAN’s advocacy work. It’s ambitious, but necessary for influencing policy beyond the federal level.

The Proof: Medicare Reforms and the Long View of Advocacy

PAN’s most significant policy victory illustrates exactly why the long game matters.

For roughly a decade, PAN advocated for Medicare Part D reforms. Before 2022, beneficiaries on Medicare faced no cap on out-of-pocket drug costs—meaning some individuals spent $5,000, $10,000, $15,000 or more annually on medications. It was a catastrophic burden that flew in the face of PAN’s mission to make care affordable and accessible.

The organization advocated alongside other patient groups, shared stories from affected patients, educated policymakers about the human impact of uncapped costs. Year after year, nothing changed. The work felt thankless. But PAN kept showing up.

Then, in August 2022, the Inflation Reduction Act passed—and included key Medicare reforms that capped out-of-pocket costs for the first time. “It took us about 10 years,” Amy says. “But it’s funny you mentioned 10 years because that’s kind of when advocacy started at PAN. We advocated for many, many years and ultimately when the Inflation Reduction Act got passed in August of 2022, some of those key Medicare reforms were included.”

This victory didn’t happen because of PAN alone. It was a collective effort by patient advocates, nonprofits, policymakers, and grassroots activism. But PAN’s sustained advocacy—bringing patients’ voices to Congress, educating lawmakers, building relationships over a decade—was part of what made it possible.

“You really do have to have a long view of advocacy and be patient,” Amy emphasizes. “It takes time, it takes telling that story over and over again, but it’s important that we do.”

Why Patient Stories Trump Policy Briefs

One early lesson from PAN’s advocacy work: lengthy policy briefs don’t move the needle. “We spent a lot of time writing very lengthy reports around particular topics that had great content in them, but honestly, I don’t think anyone read them,” Amy admits.

What does move the needle? Patient stories. There’s a crucial difference between a PAN Foundation representative walking into a Congressional office with data, and Tim McDonald—a real patient dealing with real barriers to care—walking in with his lived experience. “It’s one thing for me on behalf of the PAN Foundation to walk into a member’s office and to speak with staff about a policy that’s just not working for patients. But it’s a whole nother thing, Tim, when you go into an office and say, here’s what I’m experiencing with step therapy or whatever the issue might be, and this is how it’s impacting me in a negative way.”

That authenticity resonates with policymakers in a way that even the most perfectly researched brief cannot. It reminds legislators that policies aren’t abstractions—they’re decisions that directly affect their constituents’ ability to afford life-saving medications.

Finding Advocates: Organic Growth and Strategic Recruitment

How does PAN find advocates? There’s no single formula, but several channels work together.

The first, and most natural, is their own patient population. PAN has served hundreds of thousands of people through their financial assistance programs. Many of these individuals have powerful stories about barriers they’ve overcome or continue to face. PAN invites them into the Patient and Family Advisory Council (PFAC), formalizing their role as advocates.

From there, growth becomes increasingly organic. PFAC members know other advocates and naturally bring them along. PAN identifies passionate storytellers at conferences, discovers engaged individuals through social media and their website who are already sharing their experiences. The advocacy network grows naturally through genuine relationships and shared mission.

“No set formula, it kind of organically grows by itself,” Amy says. The key is creating welcoming entry points—whether it’s the Advocacy Action Summit, the grassroots platform, or the emerging ambassador program—so that interested patients can find a way to engage that matches their capacity and interests.

Measuring Impact: Beyond the Obvious Metrics

If measuring policy advocacy impact is difficult, PAN has found ways to track progress without waiting for perfect metrics.

“Ultimately the impact of advocacy is passing a piece of legislation. And so that’s hard. That doesn’t happen every day,” Amy acknowledges. But they also measure success in intermediate ways: the number of patient voices engaged around a specific issue, the number of messages sent to Congress, the depth of relationships built with Congressional offices, the appearance of PAN’s priorities in legislative language.

For Medicare reforms, PAN looks back and sees that while the Inflation Reduction Act didn’t pass because of PAN alone, the organization played a meaningful role in building the grassroots support and patient testimony that made reform politically possible. “We take that as a success,” Amy says. “And so I think the impact ultimately is our ability to push for the policy solutions that we need to improve access to care.”

This is a different kind of measurement than corporate KPIs. It’s not quarterly earnings or conversion rates. It’s: Did we move the needle on this issue? Did patient voices help shape better policy? Are more people able to access the care they need? Those questions take time to answer, but they’re the ones that matter most.

The Dream: Patient Advocates in Every State

If resources were unlimited, what would Amy do? Expand state-level advocacy significantly.

“Every state is different,” she explains. While federal legislation has the advantage of impacting everyone uniformly, state policy is complex and nuanced. Medicaid rules vary by state. Insurance regulations differ. Pharmacy policies diverge. To meaningfully influence healthcare policy across the country, PAN would need advocates on the ground in every single state.

“If money resources were not an issue, that’s what I would do. I would have people on the ground in every single state helping to advance the work of PAN.”

Given recent budget proposals that threaten to shift more healthcare responsibility to states—particularly around Medicaid—this dream is increasingly urgent. States will likely have more control over healthcare policy in coming years. Being present in every state capitol, not just Washington DC, will be essential to advocating for accessible, affordable healthcare.

Three Pillars, One Mission: Financial Assistance, Advocacy, and Education

What makes PAN Foundation distinctive is how it balances three interconnected pillars:

Financial Assistance: Through 80+ programs, PAN provides direct grants covering medications, copays, deductibles, and cost-sharing. Over 20 years, the organization has helped 1.3 million people while providing $4.5 billion in assistance. “I always say, gosh, I wish we didn’t have to do this work, but we do,” Amy reflects. “We’re still probably just scratching the surface of the people who need our help.”

Advocacy: Working to change the policies that create barriers to access in the first place. Medicare reforms, prior authorization restrictions, copay accumulators, step therapy—PAN advocates for systemic solutions.

Education: Helping patients and healthcare providers navigate complex healthcare systems, understand treatment options, and make informed decisions.

These three work together. Financial assistance provides immediate relief but also builds relationships with patients who can become advocates. Advocacy work identifies systemic barriers that inform educational priorities. Education empowers patients to engage in their own healthcare and potentially become advocates themselves. It’s a virtuous cycle focused entirely on the mission: making sure everyone can afford and access the care they need.

The Power of Saying No

One insight Amy shares candidly: advocacy organizations must be willing to say no.

“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,’” she emphasizes. Funders might want PAN to focus on specific issues or measure impact in specific ways. But PAN’s leadership needs to maintain clarity about their mission and values.

“There is probably another group that’s aligned, but maybe not us,” Amy explains. This kind of integrity—staying true to mission even when it means declining resources—is what allows advocacy organizations to maintain the trust of both their donors and their patient advocates. It’s harder in the short term. But it pays dividends in the long term.

Getting Involved: Finding Your Role in Healthcare Advocacy

For anyone inspired to engage in healthcare advocacy, PAN Foundation offers multiple entry points:

Visit panfoundation.org to learn about their programs and advocacy initiatives. Join the grassroots campaigns by using their advocacy platform to send personalized messages to Congress. Consider applying for the Patient and Family Advisory Council if you’re a PAN patient with a passion for advocacy. Look for the annual Advocacy Action Summit—an opportunity to meet fellow advocates and engage directly with policymakers in Washington DC. If you’re interested in state-level work, keep an eye out as PAN develops their ambassador program.

Final Thoughts

Amy Niles transformed the PAN Foundation from a vital financial lifeline into something more: a movement. By recognizing that the hundreds of thousands of patients they serve have expertise born from lived experience, PAN created pathways for those patients to become advocates—not just for themselves, but for millions of others facing the same barriers.

The lesson is powerful: organizations that serve patients have an obligation to listen to them, to amplify their voices, and to channel their experiences into systemic advocacy. Personal stories matter. Policy change matters. And combining the two—bringing authentic patient voices to the halls of power—creates change that no amount of research alone could ever achieve.

That’s not advocacy as charity. That’s advocacy as transformation.