Every week, somewhere in the advocacy world, someone is quietly doing something remarkable. They’re not doing it for the spotlight, they’re doing it because patients need them, because gaps exist that someone has to fill, because they’ve lived through something hard and decided to turn that into fuel for others. That’s what This Week in Advocacy is all about. Three people. Three wins. Real work, real impact.

Let’s get into it.

Vanessa Ghigliotty, CPN — New Role, Longtime Heart

If you’ve spent any time in the GI cancer advocacy space, you already know Vanessa. She’s been showing up, at conferences, at events, in conversations that matter, for years. So when the GI Cancers Alliance announced she’s joining their team as Community Engagement Specialist, the response was less surprise and more: of course she is.

Vanessa is a 24-year colon cancer survivor. Let that sink in. Twenty-four years of living with that experience, processing it, and then turning it outward in service of others. She’s also a Certified Patient Navigator, which means she brings both the lived wisdom and the professional training to meet patients and caregivers where they actually are.

In this new role, she’ll be deepening connections to GI Cancers Alliance members, supporting patients and caregivers, and working to close the gaps in unmet needs across the global GI cancer community. That last part, closing gaps, is no small thing. The unmet needs in GI cancer are real and they’re serious, and having someone with Vanessa’s combination of survivor perspective and navigational expertise focused on that work is genuinely exciting.

Find Vanessa on LinkedIn and give her a well-deserved congratulations: linkedin.com/in/vanessa-ghigliotty-cpn-69974736/

Gretchen A. McNally, PhD, MPH, ANP-BC, AOCNP — Where Research Gets Real

Gretchen McNally has credentials that could fill a business card twice over, but what caught my attention this week wasn’t the alphabet after her name. It was the genuine joy in her voice when she talked about being included in a SWOG Cancer Research Network brainstorming session on Symptom Management and Survivorship.

“I feel so incredibly lucky,” she wrote. And I believe her.

That kind of enthusiasm about collaboration in research, the operationalization of research ideas, as she put it, is exactly what the field needs more of. It’s easy to get cynical about how slowly research moves, about the gap between a promising idea and something that actually helps a patient sitting in a waiting room. But people like Gretchen are the ones who live in that gap, who find meaning in it, and who help push ideas across the finish line.

SWOG’s Symptom Management and Survivorship work is critically important. Survivorship isn’t just about living, it’s about living well, and the symptom burden that cancer survivors carry is chronically under-addressed. Having passionate, clinically grounded advocates like Gretchen at the table for those conversations matters.

Follow her work on LinkedIn: linkedin.com/in/gretchenannemcnally/

Rebekah Cutting — From the Ambulance to the Foundation

Some people come to patient advocacy through illness. Some come through loss. And some come through seventeen years of showing up in the hardest possible moments, like Rebekah Cutting, a paramedic with the South Australian Ambulance Service who has just joined the Ryan Bowman Legacy of Care Foundation.

Rebekah brings frontline emergency care experience that most advocates simply don’t have. She knows what it looks like when the medical system meets a human being at their most vulnerable, because she has been the person responding to that call. She’s developed what the Foundation describes as a deep passion for compassionate, patient-centred healthcare and a profound respect for dignity, comfort, and connection at the end of life.

The Ryan Bowman Legacy of Care Foundation does meaningful work at the intersection of palliative care and community support, and adding someone with Rebekah’s hands-on clinical and advocacy background to that team is a genuine asset. There’s something powerful about a paramedic who has held the space at the end of someone’s life choosing to keep doing that work — just in a different form.

Follow the Foundation’s work on LinkedIn: linkedin.com/company/the-ryan-bowman-legacy-of-care-foundation/

That’s your This Week in Advocacy. Three people doing the work, in three very different ways, all pointing in the same direction: toward patients, toward dignity, toward a world where no one has to navigate this alone.

If you’re not already subscribed to Advocacy at Work, this is a great moment to change that. And if you know someone who deserves to be featured here, an advocate doing something worth celebrating, send them my way. Nominate someone for next week by filling out this form, replying to this post or reaching out through advocacyatwork.com. I want to hear about the work you’re seeing in your corner of this community.

Almost none of them set out to become one.

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

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

Sound familiar?

Advocacy as therapy

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

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

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

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

You don’t have to do it all

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

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

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

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

That’s enough. That has always been enough.

The hospital room phone call

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

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

My nurse waited the whole time. She heard everything.

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

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

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

What Scott is working on now

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

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

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

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

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

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

That’s the whole point, after all.

— Tim

"Kirk Triplett wearing my name at the Cologuard Classic — a reminder that this work has never been mine alone."

I’m not publishing a new episode this week.

Not because there’s nothing to say. I have two conversations recorded and ready to go that I genuinely can’t wait to share with you. One is about Type 1 Diabetes. One is about traumatic brain injury. Both reminded me why I started this podcast in the first place.

But with Memorial Day weekend here, I’m giving us both a pause. A chance to breathe, to reflect, and if you’ve missed anything along the way, to catch up.

When I launched Advocacy at Work last fall, I had a single conviction: the real work of advocacy is happening everywhere — in hospital waiting rooms, at bathroom floors after chemo, at Pride festivals, in rural Appalachian communities, in Congressional hearing rooms, at 5K start lines — and my job was simply to find the people doing it and get out of the way.

Thirteen episodes later, I’m more convinced of that than ever.

Here’s what we’ve covered so far. Each one links directly to the episode. I hope you’ll share anything that resonates with someone who needs it.

Beyond Policy: How Corporate Advocacy Drives Real Change in Colorectal Cancer Screening Bryan Goettel, Director of Advocacy & Alliance Relations, Exact Sciences — November 2025

The episode that opened the season. Bryan helped me put words to something I’d long felt: a for-profit company can be a genuine partner in advocacy when the mission alignment is real. We talked about what the Cologuard Classic has built, how Exact Sciences approaches the advocacy community, and what it costs emotionally to build relationships in a space where people die. “The pain of losing somebody,” I told him, “is only eclipsed by the joy of knowing them.”

From Surviving to Serving Liz Healy (in Memory) — December 2025

Liz was hit by an out-of-control skier on a Vermont mountain in 2022. The imaging for a broken tailbone revealed kidney cancer, and a fourth surgeon at Memorial Sloan Kettering caught what three others had missed: stage four colorectal cancer already spread to her liver and lymph nodes. She was given a 7% chance of living five years. Three and a half years later, she’s run the New York City Marathon while on treatment, enrolled in a clinical trial at Mass General, and built a team of 20 runners whose lives have been touched by colorectal cancer. Her definition of advocacy: “Turning pain into purpose.” This one sets the tone for everything that follows.

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

Anjee has been leading Fight CRC long enough to watch the community go from support groups too embarrassed to fill a room to hundreds of advocates walking the halls of Congress. She helped pass the colonoscopy loophole bill — a ten-year effort. She built the Colorectal Cancer Care Report so that funders follow the mission, not the other way around. The line I keep coming back to: “If someone had said you shouldn’t do it in year one because you didn’t move it forward, we wouldn’t have had that passed.” The long game is the only game.

Finding Your Lane JJ Singleton — January 15, 2026

JJ was 27 when he was diagnosed with colorectal cancer, and he spent years on the bathroom floor after chemo watching athletes talk about overcoming adversity on TV. “Nobody ever shows this part,” he thought. A clinical trial saved his life. Then he discovered advocacy, almost by accident, saying yes to a 15-minute Zoom call that opened into an entirely different world. His focus is rural Appalachia: the communities that can’t reach a comprehensive cancer center, where nobody talks about the mental health spiral that nearly killed him faster than the cancer. He posts about the bad days, the suicidal thoughts, the ugly parts. He also breaks down something most advocates never discuss: how to make advocacy financially sustainable when you’re on Medicare and Medicaid.

Preventing Cancer Before It Happens Erin Peterson, Senior Director of Mission and Partnerships, Colon Cancer Coalition — January 22, 2026

Erin runs the mission side of the Colon Cancer Coalition, the organization behind Get Your Rear in Gear, now 40 events a year across North America and the Bahamas. What makes it work is how it grew: not through top-down corporate strategy, but by waiting for someone in a new city to raise their hand and say “I want to do this here.” Erin makes a point that stops you cold: colorectal cancer is one of the only cancers we can actually prevent — not just detect early, but prevent — by removing precancerous polyps. And the barriers to screening are rarely medical. They’re transportation, childcare, time off work, and the cost of bowel prep.

From Stage Four to a Movement Trevor Maxwell, Founder, Man Up to Cancer — January 29, 2026

Trevor was 41 when he was diagnosed with stage four colon cancer and began withdrawing from everyone he loved. He noticed that in every support space he entered, the ratio was the same: three women for every man. Men weren’t showing up to ask for help. They were isolating instead. So he built something specifically for them. Man Up to Cancer now has 40 chapters across North America, an annual Gathering of Wolves retreat, and a Chemo Care Backpack Program, all completely free to men in the cancer community. His definition of an advocate: “A role model.” I serve as Florida Chapter Leader for Man Up to Cancer, and this conversation meant a great deal to me personally.

Building Careers and Movements Michael Holtz — February 5, 2026

Michael has been doing cancer advocacy work for 23 years, longer than most people in the space realize. It started professionally at the American Cancer Society. It became personal when he was diagnosed with stage three rectal cancer in 2012, and he went fully public: diagnosis, treatment, life with an ostomy, all of it. Over two decades he’s run four forms of advocacy in parallel: media, legislative testimony, research peer review, and now as board chair of Man Up to Cancer. His north star after all of it: “That one day kids will ask, what the heck was cancer?” He also carries the names of those he’s lost on the back of his shirt, including his dear friend Ryan, who died pursuing a clinical trial. He doesn’t look away from that part of the work.

From Isolation to Impact Allison Rosen — February 19, 2026

Allison was 32 and in the best shape of her life when she was diagnosed with early-onset colorectal cancer. She went looking for a young adult support group at MD Anderson, one of the nation’s premier cancer centers, and found that one didn’t exist. So she helped create it. Thirteen years later she’s one of the most thoughtful voices in research advocacy, and she’s given us a frame I’ve been thinking about ever since: “Lived Experience Expert.” After the names on our charts, she says, it should read LEE. We didn’t get a PhD, but we are experts in our experience, and that expertise belongs at the research table from the very beginning, not as a checkbox at the end.

The Power of Showing Up Casie Shimanski, Founder, Team Live Out Loud — February 26, 2026

Casie has raised nearly $200,000 for children’s cancer research through St. Baldrick’s Foundation — one year, one ask, one shaved head at a time. She’s been a top fundraiser for eight consecutive years. When people ask how she does it, they want an easy answer. Casie’s answer is harder: consistency. “Most people don’t want to hear that,” she says. “They want the easy answer and there’s not one.” She first raised $600. She didn’t even shave that year. She just showed up. That’s still the whole strategy.

Speaking About the Unspeakable Marielle Santos McLeod, Director of Strategic Programs, Cancer Hope Network — March 19, 2026

Marielle is nine years out from her colorectal cancer diagnosis and has made it her life’s work to break the cultural silence that costs Latino lives. We talked about what it takes to make colonoscopy prep a normal topic in communities where talking about it — let alone cancer — is simply not done. “We don’t talk about things like these,” she says. “Oftentimes as Latino patients we’re diagnosed automatically at later stages.” She’s also one of the sharpest minds in clinical trial advocacy I’ve encountered, and she carries with her a message for every patient: know your biomarkers from day one. Don’t wait to be told.

Beyond “Just a Rash” Nora Eigenbrodt, Associate Director for Grassroots Advocacy, National Eczema Association — April 2, 2026

Thirty-one million Americans have eczema. Most of the world thinks it’s a minor inconvenience. Nora is working to change that, through a three-track ambassador program spanning legislative work, community engagement, and research literacy. She also told me something I didn’t know: through sustained advocacy, the National Eczema Association got eczema added to the Department of Defense’s Peer Reviewed Medical Research Program for FY25 and FY26. That’s not a small thing. That’s the long game paying off. Her reminder: Congress is a marathon, not a sprint.

From Butt Pics to Public Health David Russo, Founder, Cheeky Charity — April 16, 2026

David built a movement out of a converted Sprinter van, a cross-country road trip through national parks, and a willingness to post cheeky photos of himself on Instagram paired with public health messages. What started as a quirky personal project is now a 501(c)(3) nonprofit with a Butts and Badges program that has put 15,000 pins on healthcare providers across the country, a growing Pride Festival presence, and a new education platform at ScreenYourButt.org. He is also, by his own admission, a very large introvert. Which honestly makes the whole thing even better.

When Your Child’s Diagnosis Becomes Your Calling Jessica Cella — April 30, 2026

Jessica’s son was diagnosed with primary adrenal insufficiency at Rady Children’s Hospital in San Diego in January 2019. She was told that if he ever went into an adrenal crisis, the paramedics who responded couldn’t give him the medication he needed — they couldn’t administer it. So she trained 1,100 paramedics. Then she worked with San Diego to develop a brand-new protocol that takes effect July 1st of this year. She was named 2026 California Senate District 40 Woman of the Year. She told me something I’ve been sitting with since: “I don’t actually advocate for my son. I advocate for children and families who don’t have the luxury my family has.” She didn’t need Capitol Hill to save lives. She needed her neighborhood.

What’s Coming Next

We’re back next week with two conversations I’ve been looking forward to sharing, one focused on Type 1 Diabetes advocacy and one on traumatic brain injury. Both reminded me that the wound really does become the wisdom, and the wisdom really does become the work.

If you’ve been here since the beginning, thank you. If you’re finding this for the first time, start anywhere, every episode stands on its own. And if you know someone who needs to hear any of these stories, please share.

Enjoy the long weekend. I’ll see you on the other side.

— Tim

I was a guest on Darrell’s podcast, Breaking Mental Health. Here’s what I couldn’t stop thinking about after.

There’s a question Darrell asked me early in our conversation that I’ve been sitting with ever since.

“At any point during the whole cancer thing, did reality actually set in for you?”

It’s a deceptively simple question. And the honest answer is complicated, because yes, reality set in. I knew I had a terminal disease. I knew the five-year survival rate for Stage IV colorectal cancer was 13%. I knew I might not be here for too long.

But here’s the part that’s harder to explain: knowing all of that, and still choosing to live in the moment anyway, isn’t denial. It’s a decision.

I was a guest recently on Breaking Mental Health, a podcast hosted by Darrell, who is one of those rare interviewers who actually listens. Not just to what you say, but to what you're trying to say underneath it. He's also someone who speaks openly about his own struggles with depression and anxiety, and that kind of honesty creates a space where you can be equally honest back.We talked for a while, and I want to share a few moments from that conversation, not because I said anything new, but because sometimes hearing your own story reflected back to you reveals something you hadn’t fully named yet.

On the diagnosis itself

When the urgent care doctor told me I had cancer, I was so calm that he asked if he should call my wife to come get me. I wasn’t in shock. I wasn’t numb. I had spent nearly a decade practicing mindfulness and meditation, and in that moment, all of it kicked in.

My first honest thought was: What do we do next?

My second thought was: How am I going to tell my wife when I get home?

That second one was harder.

On the only statistic that mattered

I threw out almost every number they gave me. Except one.

13%. That’s the five-year survival rate for Stage IV colorectal cancer patients.

Most people hear 13% and think: small. I heard 13% and thought: I am going to be one of those people. I knew other men had made it. They were the reason I believed I could. And so I latched onto that number not as a ceiling, but as a club I was going to join.

On the dark thoughts — and where they went

There’s something I shared on the podcast that I don’t always say out loud: there were moments during chemo where the cumulative fatigue — physical, mental, emotional, all of it stacked on top of itself — got to a place where I wondered if it was worth it.

I never got to the point of saying no. But those thoughts existed. And I think it’s important to say that, because pretending they didn’t doesn’t help anyone who’s having them right now.

What helped me was having Man Up To Cancer, a men’s cancer group, where I could let those thoughts out the moment they arrived. Not hold them, not analyze them, not carry them — just release them into a space where someone else would say I know exactly what you feel. And then they’d be gone. I’d be back.

That outlet wasn’t optional for me. It was survival.

On being the 13% for someone else

It took me almost two years after reaching No Evidence of Disease before I could walk back into a support community without feeling like a fraud. I thought: What do I have to offer someone who’s in active treatment right now?

It took a therapist. It took other survivors. And eventually, it took someone going through chemo looking me in the eye and saying, Tim, you are giving me hope.

I had been so inside my own head, worrying about how others would judge me for being there, that I had forgotten the only reason I believed in that 13% was because someone else had already made it there before me. They showed up for me without knowing it. I owed that to the next person coming in.

I could keep going, but that’s exactly why you should listen to the full episode.

Darrell asks questions that go places most interviewers don’t — vulnerability, mortality, how men process fear differently, what cancer taught me about who actually belongs in your life. We talked about traveling during treatment, meditation that doesn’t look like meditation, and what it means to be open to receiving help in whatever language someone offers it.

🎙️ You can find Breaking Mental Health Podcast wherever you listen to podcasts. The episode is called “What Happens Mentally When You’re Told You May Be Dying.” Give it a listen, and if it moves you, share it with someone who needs it.

And if any of this resonates with your own story, as a patient, a caregiver, or someone quietly wondering if they’re going to be okay, my inbox is always open.

The wound becomes the wisdom, and the wisdom becomes the work.

— Tim

Tim McDonald is a colorectal cancer survivor, patient advocate, and author of From Patient to Advocate: Turning Survivorship Into Impact. Find him on Substack at advocacyatwork.com and on LinkedIn.

There’s something different about being interviewed by someone who actually listens.

I’ve done a lot of podcast appearances since From Patient to Advocate launched in March, and most of them follow a predictable arc. The host skims the book description, asks a few surface-level questions, and we wrap up in 20 minutes. That’s fine. I understand it. Everyone’s busy.

But my recent conversation with Dr. Timothy J. Hayes on On Your Mind was something else entirely.

We went places I didn’t expect to go. We talked about what it felt like to be told there were no options, and what it took to refuse that answer. We talked about mental health in survivorship, which is still one of the most underdiscussed parts of the cancer experience. And we talked about something I find myself navigating constantly: what do you do with the weight of losing people in this community?

That last part, I think about it a lot. When you’re an advocate long enough, loss becomes part of the job. People you’ve walked alongside, people who fought just as hard as you did, people who deserved more time. I’ve developed a framework for how I hold that grief without letting it hollow me out, and I shared it openly in this conversation in a way I haven’t in many other interviews.

We also got into the living donor liver transplant path I pursued, a chapter of my story that a lot of people don’t know, and what it truly means to become the “general manager” of your own care. That concept is at the heart of the book, but hearing it out loud in conversation, I was reminded why it matters so much. Patients are not passive recipients. We are the ones who have to hold the whole picture together.

If you’ve been wanting to get a feel for the book before diving in, or if you just want to hear this work in conversation form, I think this episode is a good place to start.

▶️ Watch on YouTube

Or listen on iTunes

Or find On Your Mind with Dr. Timothy J. Hayes wherever you listen to podcasts.

From Patient to Advocate: Turning Survivorship Into Impact is available now on Amazon. If it’s resonated with you, a review goes a long way, and sharing this post with someone who might need it means even more.

Every May, the graphics start appearing.

Soft colors. Gentle fonts. “It’s okay to not be okay.” Reminders to check on your strong friend. Statistics about one in five Americans living with a mental health condition. All of it well-intentioned. Most of it true. And almost none of it reaching the people who need it most.

I’m not here to dismiss the awareness. The stigma around mental health is real, and any conversation that chips away at it has value. But after five years of living inside the cancer and patient advocacy world, and considerably longer sitting with my own mental health, I’ve come to believe that the way we talk about this month is missing something important.

It’s too clean. Too resolved. Too much before-and-after, and not enough during.

The Mental Health Nobody Photographs

Here’s what a mental health awareness post rarely looks like:

You’ve been in remission for two years. You’re doing meaningful work. People call you inspiring. You speak at conferences. You wrote a book. From the outside, you have more than survived — you’ve built something.

And then on a Tuesday afternoon, you get a message that someone from your community didn’t make it. Someone you’d spoken with, encouraged, watched fight. You read the message. You set your phone down. You go make a cup of coffee, because you don’t know what else to do with it.

That’s survivorship. That’s advocacy. That’s also a mental health experience that doesn’t fit neatly into awareness month messaging.

I’ve written about the grief that comes with this work before, specifically the toll that loss takes on advocates who are doing the emotional labor of walking alongside people through some of the hardest moments of their lives. → Read: The Hidden Cost of Patient Advocacy: Grief, Burnout, and Survivorship

What I didn’t fully understand when I started was how cumulative it gets. Each loss lands differently. And the longer you do this work, the more relationships you’ve built, which means the more loss you experience. That isn’t a reason to stop. But it is a reason to be honest about what the work actually costs.

When the Hard Part Doesn’t End When Treatment Does

One of the things I’ll be talking about in my Bloom TV appearance later this month is the survivorship gap. The strange, disorienting space that opens up after active treatment ends.

While you’re in treatment, there’s a structure. Appointments. Protocols. A team. People checking in. The medical system, for all its gaps, gives you a roadmap.

And then treatment ends, and everyone celebrates, and you’re supposed to feel relief — and sometimes you do. But often, underneath the relief, there’s something else. Anxiety about recurrence. Grief for the person you were before diagnosis. A kind of identity vertigo. Who am I now? What do I do with all of this?

Most mental health awareness messaging doesn’t reach that person. It speaks to the person who hasn’t yet acknowledged they’re struggling. But what about the person who did the work, got through it, built a life on the other side — and still has hard days? That person exists too. I am that person sometimes.

The survivorship mental health conversation deserves its own language. It isn’t the same as the pre-diagnosis conversation. It lives in a different part of the body.

What It Takes to Actually Get Better (And It’s Probably Not What the Posts Say)

I want to be specific here, because vague self-care advice is part of the problem.

Therapy helped me. I don’t say that casually, I say it as someone who resisted it, who thought I could process everything through reflection and writing and forward motion. I was wrong. Having a skilled, qualified person help me understand my own patterns, my grief, my relationship to control and vulnerability — that changed things. It didn’t fix everything. Nothing fixes everything. But it gave me tools I didn’t have before.

A decade of mindfulness and meditation practice helped me. Not the app-based, five-minute version (though there’s nothing wrong with that as a starting point). The kind that becomes a genuine daily practice, that teaches you to sit with discomfort rather than immediately trying to solve or escape it.

Community helped me — specifically, the right community. This is where Man Up to Cancer changed my life in ways I’m still processing. Finding a room full of men who were living with cancer and not pretending otherwise. Men who cried and said “I love you” and showed up for each other. Not despite their strength — as an expression of it.

→ Read: More Than an Event: Reflections from Gathering of Wolves 2025

And losing people, really sitting with it rather than rushing past it, helped me understand something that took years to learn: I don’t have to be angry at cancer for bringing Chuck and Lee into my life in order to be angry that it took them. The grief and the gratitude can live together. The wound, over time, becomes the wisdom. And the wisdom becomes the work.

The Men in the Room (Or Not in the Room)

I’d be leaving something important out if I didn’t name this directly.

Mental Health Awareness Month, in its current form, largely doesn’t reach men. Not because men don’t need it, the data is staggering on that front, but because the way it’s packaged doesn’t connect with how most men have been taught to think about themselves.

As many as 70% of young men avoid mental health services entirely. The research on traditional masculinity and health behavior is consistent: the “be strong, handle it yourself, don’t show vulnerability” script is deeply internalized, and it keeps men from getting help long before it keeps them from advocacy.

I felt that pull myself. When I was first diagnosed, my instinct was to research alone, process quietly, present the composed version to everyone around me. What broke through wasn’t a social media graphic. It was other men, specifically men who had gone before me, who modeled what it looked like to be open and strong, honest and resilient.

If you’re a man reading this, and mental health month has always felt like it was speaking to someone else: it’s speaking to you. The way you access it might look different. Community before clinical, sometimes. Story before statistics. But you deserve support as much as anyone.

What I Actually Want From This Month

I want the conversation to go deeper.

I want it to reach the cancer survivor two years out who is quietly struggling and doesn’t think they’re allowed to say so anymore. I want it to reach the advocate who is burning out from carrying other people’s pain without ever being asked how they’re doing. I want it to reach the man who won’t call a therapist but might show up to a retreat if another man he respected invited him.

I want the messaging to make room for the during — not just the before and after.

And I want it to be honest about what helps. Not just “reach out if you need help” — but here’s what reaching out looked like for me, and here’s what changed.

If you’ve been doing this work — advocacy, caregiving, survivorship — and you’re tired in a way that sleep doesn’t fix: that’s a real thing. It has a name. And it doesn’t mean you’ve failed at any of this. It means you’ve been paying attention.

If you want to go deeper on building sustainable advocacy practices — including how to handle burnout, loss, and the emotional weight of the work — my book From Patient to Advocate: Turning Survivorship Into Impact has a full section dedicated to exactly this. It’s the guide I wish I’d had.

Tim McDonald is a stage IV colorectal cancer survivor, liver transplant recipient, and patient advocate. He is the Florida Chapter Leader for Man Up to Cancer, a Research Advocate with Fight Colorectal Cancer, and the host of the Advocacy at Work podcast.

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

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

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

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

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

Understanding Adrenal Insufficiency (The Simple Version)

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

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

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

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

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

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

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

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

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

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

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

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

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

Starting Small: Emergency Kits and Filling Local Gaps

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

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

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

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

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

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

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

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

The Paramedic Protocol Victory: Local Change That Saves Lives

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

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

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

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

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

That’s not small. That’s transformational.

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

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

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

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

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

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

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

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

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

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

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

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

The Magic Wand: A Vision for Emergency Response Across America

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

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

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

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

The Real Power of Local Advocacy

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

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

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

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

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

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

How to Get Involved

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

• Connect with local adrenal insufficiency support communities and nonprofits

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

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

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

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

Final Thoughts

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

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

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

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

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

Advocacy at Work | by Tim McDonald

Before the day begins. Gathering of Wolves.

There's a version of this conversation that gets told a lot in advocacy circles. It goes like this: you go through something hard, you find your purpose in it, you turn your pain into impact. And that's true. That part is real.

But there’s a part that comes after it that almost nobody talks about.

The part where you’ve been doing this work for a few years and you’re sitting at your laptop trying to write something meaningful about a cause you genuinely love… and you feel nothing. Not cynicism, not burnout exactly, just a flatness where the fire used to be. The part where you get a message that someone in your community didn’t make it, and you read it, set your phone down, and go make a cup of coffee because you don’t know what else to do with it. The part where you’ve told your story so many times — to congressional staffers, to conference audiences, to podcast hosts, to strangers — that it starts to feel like it belongs to someone else.

I’ve been living in that part lately. Not drowning in it. But present to it in a way I think is worth naming out loud.

The Framework We Were Never Given

Here’s what I’ve come to understand about why patient advocacy burnout is different, and why the field has been so slow to name it.

When a nurse, a social worker, or a therapist experiences the emotional exhaustion of sustained exposure to others’ pain, there’s a framework for it. Researchers call it compassion fatigue — the gradual erosion of empathy that happens when you’re absorbing too much, too often, without adequate recovery. The field has terminology for it, clinical supervision structures built around it, professional development that addresses it. There are journals. Continuing education credits. Employee assistance programs.

None of that was built with us in mind.

And there’s a reason for that — one that goes deeper than oversight. The entire compassion fatigue framework was designed around a fundamental assumption: that the helper and the person being helped are different people. The clinician has their own life. Their own health. Their own story. There is, however porous, a professional boundary between their experience and the patient’s.

Patient advocates don’t have that boundary. We don’t get to have it.

We are the patient. Our origin story is the same story we’re carrying for everyone else. When we sit across from someone newly diagnosed, we are not observing their fear from the outside, we are re-entering our own. Every person in the community who gets bad news is, in some way, a version of us at a different moment in time. Every loss in the community lands on ground that is already personal.

And many of us didn’t even wait for the relative distance of survivorship to begin this work. Many advocates start while still in active treatment, still mid-diagnosis, still inside the experience they’re speaking about, which means the emotional labor begins with zero buffer at all.

I’ve been looking for a clinical term for this particular position for a while. I haven’t found one. The research literature on compassion fatigue doesn’t adequately account for the advocate who is also the patient, carrying their own unresolved medical reality into every interaction, every story, every room. That gap in the framework is not a minor omission. It’s a fundamental blind spot.

What That Difference Actually Feels Like

When a therapist loses a patient, they are trained to grieve it within a clinical structure. They have supervision. They have colleagues who understand the specific weight of that loss within a professional context. They have, crucially, a self that exists outside the work, one that was never sick, never diagnosed, never sitting in the chair on the other side.

When a patient advocate loses someone in the community, it hits differently. On multiple levels simultaneously.

You lose a person. Someone you texted. Someone who made you laugh at a conference at 11pm when you were both exhausted. Someone whose scan results you’d been waiting on.

You also lose — briefly, painfully — a piece of your belief in the work. The story you’ve been telling on stages — this matters, early detection saves lives, we are making progress — catches in your throat. Because you believed it. You still believe it. And someone you knew and cared about died anyway.

And underneath all of that, something else: a quiet, unwelcome reminder of your own mortality. When someone who walked a similar road dies, it isn’t just their loss you’re sitting with. It’s the echo of your own diagnosis, your own fear, your own unanswered question, why am I still here when they are not?

A clinician can grieve a patient without that third layer. We can’t.

At the Cologuard Classic this past March, there was a bittersweet remembrance of advocates we’d lost, including Liz Healy and Jill MacDonald, people whose work shaped this community profoundly. The room held it with grace. And I held it too. But I carried it out of that room and back home with me, and it didn’t just dissolve.

It doesn’t dissolve. It accumulates. And unlike a clinician who goes home to a life entirely outside the diagnosis, we go home to our own survivorship. There’s no clean exit from the material.

The Cost of Telling Your Story

There’s another dimension to this that I haven’t seen written about honestly, and it connects directly to the professional-patient divide.

A therapist who helps a client work through trauma is not, in that moment, re-accessing their own trauma. Their skill is in holding space for someone else’s experience. The emotional labor is real, but it is not also autobiographical.

Every time a patient advocate tells their diagnosis story, at a conference, on a podcast, to a congressional staffer, in a blog post, they are doing both things simultaneously. They are performing an act of service for the audience and re-entering one of the most frightening moments of their own life. You’ve learned to do it smoothly. You’ve found the language, the arc, the details that land. You’ve gotten very good at it.

But good at it doesn’t mean immune to it.

What I’ve noticed in myself is a practiced compartmentalization. I can tell the story in a way that feels authentic in the moment, because it is, and then step offstage and feel a peculiar hollowness. Not grief exactly. Something more like the emotional equivalent of a muscle that’s been used too hard and never given adequate time to recover.

A clinician doesn’t re-live their own diagnosis every time they see a patient. We do. Every single time. And the cumulative weight of that, over years, over dozens of events, over hundreds of conversations, is something we have almost no language for and almost no support around.

What I’m Learning (Slowly)

I want to be careful here not to wrap this up too neatly, because that would be dishonest. I’m writing this from the middle of it. I understand it better than I did a year ago. That doesn’t mean I’ve resolved it.

But here’s what I’m learning:

The work and the grief are not the same thing. For a long time I conflated them — thinking that if I was doing the work well, the grief was being processed. It isn’t. Advocacy doesn’t resolve survivorship. It can give it meaning. That’s profoundly different, and collapsing the two is how we end up depleted without understanding why.

Telling someone else your story is not the same as tending to it yourself. I’ve talked about my diagnosis at dozens of events. I’ve processed very little of it in private, with genuine depth and time. Those two things are not interchangeable, even when they feel similar in the moment. The stage version of your story is curated. The real version still needs attention.

Presence in the community requires some distance from the community. The advocates I know who have sustained this work for years — still doing it with genuine energy at year seven, year ten — have found ways to step out of the stream periodically. Not to abandon it. To remember there’s a shore.

We need infrastructure that doesn’t exist yet. Clinicians have supervision, peer support, and entire professional frameworks for managing this weight. Patient advocates have each other — which is meaningful, but is not the same thing. This community deserves better. Building that support structure is advocacy work too.

Why I’m Writing This

I’m writing this because I think a lot of advocates feel some version of this and assume it means something is wrong with them. That the flatness means they don’t care enough. That the hollowness means they should step back. That the grief means they’ve somehow failed at the resilience narrative this work demands.

None of that is true.

What happens to long-term patient advocates is predictable, understandable, and almost entirely undiscussed — because we keep getting folded into frameworks that weren’t built for us. We are not clinicians with a professional boundary. We are not caregivers who go home to our own uncomplicated health. We are people who survived something, built our identity around helping others survive it too, and re-enter that survival, our own and everyone else’s, every single day we do this work.

That is a particular kind of weight. It deserves a particular kind of attention.

I don’t have a five-step plan. I have some hard-won understanding, an ongoing conversation with myself about sustainability, and the belief that naming something honestly is usually the first step toward doing something about it.

So. Here’s me naming it.

If any of this sounds familiar, if you’ve felt the flatness, or the accumulated grief, or the hollowness after the story lands, I’d really like to hear from you. Not because I have answers. Because I think this is a conversation the advocacy community needs to start having, and the people best positioned to build something better are the ones who already know what it costs.

Tim McDonald is a colorectal cancer survivor, patient advocate, author of From Patient to Advocate, and host of the Advocacy at Work podcast and Substack. He serves with Fight Colorectal Cancer, Man Up to Cancer, HOPA’s Patient Advisory Panel, and the PAN Foundation.

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.

Call on Congress, 2026. Men showing up for colorectal cancer advocacy on the National Mall.

Look around the room at almost any patient advocacy conference, advisory council, or community health event, and you’ll notice something. The space is overwhelmingly populated by women — brilliant, driven, deeply committed women who have built much of what makes patient advocacy as powerful as it is today. This isn’t a critique. It’s an observation. And it’s followed immediately by a question that I keep coming back to:

Where are all the men?

This isn’t a hypothetical. I’ve been a patient advocate for over five years, a colorectal cancer survivor who stumbled into this work the way many of us do: through crisis, followed by a slow realization that my story had the power to help someone else. Along the way, I’ve sat on research panels, walked the halls of Congress, served in community leadership roles with Man Up to Cancer and Fight Colorectal Cancer, and built a platform around advocacy work. I’m proud of all of it. But I’m also acutely aware that I’m often the exception in these spaces, not the rule.

Men are living with cancer, chronic illness, and complex diagnoses in significant numbers. And yet, when it comes to raising their voices, joining advisory councils, or showing up for advocacy days — something keeps getting in the way.

I want to talk about what that something is.

The Numbers Don’t Lie — But They Don’t Tell the Whole Story Either

Men still carry a slightly higher overall cancer incidence rate than women, though that gap has been narrowing. Colorectal cancer — the disease that brought me into this work — continues to affect men and women in significant numbers, and early-onset cases are rising sharply across both groups.

And yet the pipeline of male patient advocates remains thin.

The disparity becomes even clearer when you look at related data on help-seeking behavior. Research consistently shows that men are far less likely to seek support — for health concerns, mental health struggles, or even basic preventive care. According to recent data, 55% of men don’t complete regular health screenings, and 63% skip annual medical visits altogether. As many as 70% of young men avoid mental health services entirely.

Those aren’t just abstract statistics. Those are men who never make it to the starting line of advocacy because they haven’t yet let themselves be patients in the first place.

The Wall That Stops Men Before They Start

If you want to understand why men resist becoming advocates, you have to start with what keeps them from even acknowledging they need help.

Research on masculinity and health behavior paints a consistent picture: traditional masculine norms — the “be strong, stay in control, handle it yourself” script that most of us absorbed before we were old enough to question it — create a profound barrier to help-seeking of any kind. Depression is described in the research literature as being fundamentally “incompatible” with traditional masculinity, because it’s associated with feelings of powerlessness and vulnerability. The same logic applies to chronic illness, survivorship, and certainly to standing up publicly and saying this happened to me, and I need things to change.

I felt it myself. When I was first diagnosed, my instinct wasn’t to reach out — it was to research alone, process quietly, and present the composed version of events to everyone around me. The idea of being publicly identified as a patient, let alone an advocate, felt uncomfortably close to something I hadn’t been taught to be: visibly fragile.

What broke through for me was community. Specifically, it was finding other men who had gone before me — who were strong and open, resilient and honest, who hadn’t traded their identity for their diagnosis but had let their diagnosis deepen it. Man Up to Cancer was a revelation in that way. A room full of men processing illness together, fiercely and sometimes tearfully. Not despite their masculinity. Through it.

But not every man finds that room. And the patient advocacy world — mostly unintentionally — doesn’t always make it easy.

The Advocacy Space Has a Messaging Problem

Here’s where I want to be honest, even if it’s a little uncomfortable.

Much of the existing patient advocacy infrastructure — the language, the imagery, the emotional framework — was built by and for women. Again, this isn’t a criticism. It reflects who showed up, and who showed up is who built it. But as a result, many of the entry points into advocacy feel culturally misaligned for men who are still working through what it means to be a patient at all.

Research on men’s mental health engagement found that campaigns emphasizing vulnerability or emotional openness can actually backfire with male audiences if not carefully framed — reinforcing the perception that seeking help is “unmanly” rather than dismantling it. There’s a scarcity of male role models in health advocacy. When men see other men — especially men they respect — speaking openly about illness and the need for change, it normalizes the path. Without those models, the road into advocacy feels like a solo journey into unfamiliar territory.

There’s also the practical matter of framing. Men often respond better to action-oriented language — to advocacy positioned not as “sharing your feelings” but as doing something that matters. The research. The policy work. The walking of the halls. The testifying. These are the entry points that can reach men who would never respond to a call for emotional expression but will absolutely respond to a call for impact.

I became an advocate because I wanted to do something with what had happened to me. The emotional openness came later — and it came because I was already in the work.

What Breaks Through

In my experience, three things shift the equation for men:

Another man going first. This is almost universal. The men I’ve seen step into advocacy rarely found their way there alone. Someone they trusted — a friend, a fellow patient, a doctor who spoke plainly — invited them into it. The invitation matters more than we think.

A mission they can name. “Come share your story” is a harder ask than “help us change a screening guideline” or “join us in Washington to fight for funding.” Men who would hesitate to process their experience publicly will often show up when the goal is concrete. Start with the mission. The story follows.

Permission to be exactly who they are. This is where Man Up to Cancer gets it right. There’s no requirement to be soft or to perform a particular kind of emotional openness. You can be funny, you can be angry, you can be stoic. The only requirement is showing up. That permission — to be a man and an advocate, without having to become something else first — is the thing that removes the wall.

What the Advocacy Community Can Do

If you’re a patient advocacy organization, a conference organizer, or someone who builds community in health spaces, I’d offer this:

Look at your imagery, your language, and your speaker lineups. Not to apply some kind of gender quota, but to ask honestly: Does a man who has never been in this world see himself here? If the answer is no, that’s worth addressing.

Create pathways that lead with mission and action, not just emotional process. Both matter, but the action-first door is often the one that men will actually walk through.

Find the men who are already in your community and ask them to do the inviting. Peer-to-peer recruitment among men is extraordinarily powerful. It’s often how I ended up in rooms I never would have found on my own.

And finally — celebrate the men who are advocating. Not in a tokenizing way, but in a “you belong here and your voice matters” way. Visibility creates more visibility.

A Note to the Men Reading This

If you’ve survived something — a cancer diagnosis, a chronic condition, a medical journey that changed how you see the world — and you’ve wondered whether advocacy is something you could do, I want to be direct with you:

It is. You don’t have to have all the answers, or speak perfectly, or have processed everything completely. You just have to be willing to show up and tell the truth about what you experienced and what you need changed.

The advocacy space needs your voice. Not because men are underrepresented as some kind of diversity metric, but because the decisions being made in research labs, in congressional offices, and in hospital boardrooms affect men, too, and the people in those rooms need to hear from us.

I spent the first part of my advocacy life feeling like a guest in someone else’s house. Somewhere along the way, that changed. I realized I wasn’t a guest. I belonged there. So do you.

Tim McDonald is a colorectal cancer survivor, patient advocate, author of From Patient to Advocate, and host of the Advocacy at Work podcast and Substack. He serves with Fight Colorectal Cancer, Man Up to Cancer, HOPA’s Patient Advisory Panel, and the PAN Foundation.

I walked in as an outsider. I walked out with three things that will shape how I show up at every conference going forward — with HOPA and beyond.

The Advocacy Session Spoke My Language

One of the first things that grabbed me was the advocacy session, which tackled issues that patients deal with every single day. Step therapy — where insurance companies require you to try one drug, then another, before they’ll approve the medication your doctor wanted to prescribe from the very beginning, was front and center.

This wasn’t abstract policy talk. This is something I’ve heard from patients in every community I’m part of. And it’s something that organizations like the PAN Foundation have been fighting alongside patients for years. Hearing it echoed in a room full of clinical pharmacists told me something important: the people on the clinical side of medicine are paying attention to the same things we are.

Financial Toxicity — and a Perspective I Didn’t Expect

I’ll be honest. As patients, we often carry a complicated relationship with the system — insurance companies, pharmaceutical companies, even our own doctors and pharmacists. They feel like part of the machine that makes getting well so expensive.

But what I witnessed in these sessions on financial toxicity reframed something for me. These clinical oncology pharmacists were passionate. They were talking about the changing prescription landscape, tools like GoodRx and Mark Cuban’s Cost Plus Drugs. They were raising concerns about unnecessary tests and procedures that get routinely ordered without strong scientific evidence behind them.

“It was not only eye-opening to learn about these issues — it was comforting to know that these pharmacists are on the side of patients.”

I came in with some walls up. I left those sessions with those walls down. We have more allies in the clinical world than we sometimes realize.

Science Fair, But Make It Medical Research

Remember your middle school science fair? Poster boards. Tri-folds. Standing nervously in the gym hoping someone would stop and ask about your project?

Conference posters are the professional, peer-reviewed version of exactly that, and I was not prepared for how much I would enjoy them. Many of the posters at HOPA were dense with clinical data and terminology I’m still working to fully understand. But not all of them. Some were remarkably accessible. And the more time I spent walking the room, the more I found myself drawn in.

One poster stopped me in my tracks. It focused on a common colorectal cancer chemotherapy that many patients have severe reactions to, reactions serious enough that they can’t use it at all. The research presented showed that when these patients were given very low doses and the amount was gradually increased over time, they were able to tolerate the treatment they’d previously been unable to receive.

Is this a cure? No. Is it groundbreaking on its own? Maybe not. But if this research opens the door to more studies that give more patients access to another line of treatment, that is genuinely exciting. That is hope in the form of data.

Above all, this conference reminded me of something I already believed but needed to feel again in a room full of people I’d never met: there is extraordinary power in what happens when patients and providers come together.

We don’t always speak the same language. We don’t always see the system through the same lens. But when we’re willing to sit in the same room, listen to each other, and find the shared ground — that’s where real advocacy begins.

I’ll be back next year. And I’ll walk in with a little less uncertainty and a lot more intention.

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.

Being there without organizational obligations felt strange at first. For years, the Cologuard Classic had been structured around who I was attending with and what I was there to do. This time, I just got to be present. And it turns out, being present is when the best things happen.

A Trophy, a Champion, and a Full-Circle Moment

Saturday afternoon, I found myself talking with Wendi Hawkins and her daughter in Survivor Central on the 15th green. Wendi had been paired with Steven Alker, the same golfer I was paired with last year when he won the championship. As Alker crept within two shots of the lead, I got to share with her what that day felt like for me. I couldn’t promise anything, I told her, but I would absolutely be pulling for history to repeat itself.

It did.

Alker won again, in a playoff, on the same hole as last year. Two firsts for the tournament came with that victory. And somehow, I was asked to present the trophy to Wendi. Standing there in that moment, knowing her story, knowing she had lost her husband to colorectal cancer, knowing she has remained a tireless advocate through all of it, it was one of those moments that defies easy description. It was an honor I didn’t expect and will never forget.

Andre Is an Idiot (But He’s Also All of Us)

One of the unexpected highlights of the week was a screening of Andre Is an Idiot, a documentary that is, in equal measure, one of the funniest and most emotionally gutting things I’ve ever watched. Andre was diagnosed with stage 4 colon cancer after refusing to get a colonoscopy when he was supposed to. The film is raw, real, and exactly the kind of storytelling that moves people from awareness to action. We laughed. We cried. We all knew an Andre.

The Empty Spaces

But this year also had a different kind of weight to it, the weight of absence.

My roommate from last year, Nic Young, wasn’t there. Liz Healy, someone I first met here two years ago who became one of the fiercest advocates I’ve ever known, passed away earlier this year. Taken by the same disease she fought so hard to raise awareness about. And Jill MacDonald, my CRC sister and fellow FightCRC ambassador, wasn’t there either. Jill was someone who showed all of us what it looks like to live fully while in the middle of treatment, year after year. The tournament felt different without her energy in the crowd.

There were others, too. Shawn Gibson, who for years was a cornerstone of getting the Man Up to Cancer crew where they needed to go, was missed. This year, Don Helgeson stepped up and coordinated rides for everyone, making sure nobody in our group was left stranded at an airport. That kind of quiet, logistical love matters more than people realize.

The End of an Era

There was a larger transition hovering over this year’s event as well. Exact Sciences, the title sponsor and maker of the Cologuard test, is being acquired by Abbott. Meaning this was the final Cologuard Classic with Exact Sciences as its own standalone company. Kevin Conroy, their longtime CEO, has stepped down as part of that transition.

It’s the end of something, and it’s right to acknowledge that. But the commitment has been made: the Cologuard sponsorship will continue. The tournament, the advocacy gathering, the mission. All of it carries forward. That matters.

500 Strong

When I think about 140 advocates five years ago growing to 500 today, I don’t just see a number. I see Liz. I see Jill. I see Wendi holding a trophy. I see a room full of people who either beat this disease, are fighting it right now, or lost someone to it, and who refuse to let that be the end of the story.

Coming to the Cologuard Classic unsponsored this year meant I was free to feel all of it. The joy, the grief, the full-circle moments, the absences that sting, the new connections that fill you back up. I wouldn’t have traded it for anything.

See you in Tucson next year.

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.”

This week, I co-led the Florida delegation, and it was the most powerful experience I’ve had in five years of doing this work.

We had first-time attendees this year. People who had never been to Washington, never knocked on a congressional office door, never told their story to a legislative aide in a formal meeting setting. And watching them step into that role, watching them find their voice, reminded me exactly why I wrote From Patient to Advocate: Turning Survivorship Into Impact.

Because here’s what I know to be true: more patient voices change the equation.

When a legislative aide hears one patient story, it’s moving. When they hear ten stories in a single week — from people across Florida, across the country, across demographics — the weight of this disease becomes impossible to ignore.

Colorectal cancer accounts for 9% of cancer deaths but receives only 3% of federal research funding. That gap is not an accident. It persists because for too long, not enough of us were in the room.

This week, we filled the room.

We stood on the National Mall surrounded by thousands of blue flags, each one representing a life. We met with congressional offices. We flexed (literally — you see in the photos). We showed up for the people who couldn’t be there anymore, and for the people who will be diagnosed next year.

To every first-timer in our Florida group: you were extraordinary. Your stories moved people. They moved me. And I hope you felt what I felt five years ago, that moment when you realize this work matters, and so do you.

This is advocacy. This is why we go.

If you’ve been thinking about getting involved but don’t know where to start, that’s exactly what my book is for. From Patient to Advocate is available now.

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.

This is one of them.

In the past few days, I lost two people who meant a great deal to me and to this community. Liz Healy and Steven Rempel.

I’m not ready to write about them in the past tense.

But here I am.

Liz Healy was one of those people who made you feel like the most important person in the room. Even as her own health declined, she kept showing up. Kept advocating. Kept pouring herself into this community with a generosity that left me speechless more than once.

In December, I had the privilege of sitting down with Liz for a conversation on the Advocacy at Work podcast. She was brilliant, honest, and characteristically generous with her wisdom. If you haven’t listened, I hope you will. It’s the kind of conversation that stays with you.

Listen to my conversation with Liz Healy here

Steven Rempel came into my life the way so many of my most meaningful friendships have—through cancer.

That’s one of the strangest gifts this disease gives you. It strips away the small talk and the surface-level connections and replaces them with something raw and real and lasting.

Steven showed me this better than almost anyone.

At their first Gathering of Wolves retreat, he met Jose—another Man Up To Cancer brother from San Diego. Two men brought together by cancer, by community, by the kind of shared experience that forges friendships faster and deeper than almost anything else in life. They became best friends.

When Jose passed away suddenly after returning from our retreat the second year, the loss was devastating. But what Steven and Jose had built in that time—that friendship, that brotherhood—was proof of something I’ve come to believe deeply: that the connections cancer forces us to make are among the most profound we’ll ever have.

We lost Steven too, who now will be with Jose again.

I think about the two of them often.

The kind of friends you don’t realize you needed until you’re sitting with the fact that they’re gone.

Losing people in this community never gets easier.

I’ve been in the cancer advocacy space for five years now, and I’ve learned that grief doesn’t go away. You just learn to carry it differently. You learn to let it fuel something instead of consuming you.

That’s what advocacy is, for me.

It’s not a career move. It’s not a brand. It’s not something I do because I’m especially brave or especially qualified.

It’s something I do because of people like Liz and Steven. And Jose.

Because they fought so hard, and they deserved better.

Because somewhere right now, someone just got a diagnosis and doesn’t know what comes next.

Because screening saves lives and not enough people know it.

Because patient voices belong in research rooms and legislative chambers and hospital boardrooms.

Because the system doesn’t change itself.

This is why I advocate.

And this is why, after several months of working on it, I’m about to put a book into the world.

“From Patient to Advocate: Turning Survivorship Into Impact” launches March 1st.

I wrote it for everyone who’s been through something hard and felt that quiet pull toward doing something about it. The people who sit in waiting rooms thinking “this could be better.” The survivors who’ve been told “you’re so inspiring” but have no idea what to do with that. The caregivers who’ve watched someone suffer and thought “never again—not if I can help it.”

I wrote it for Liz. For Steven. For Jose. For every person we’ve lost who deserved to see the change they fought for.

And I wrote it for you—the person reading this who hasn’t started yet but knows, deep down, that you want to.

If you’re in the Tampa Bay area, I’d love to see you in person.

I’m hosting a book launch celebration on March 12th in Clearwater—an evening of conversation, community, and yes, books. We’ll have time to talk, connect with fellow advocates, and celebrate together.

Because this work is too heavy to carry alone, and too important not to celebrate.

RSVP here

For those of you who joined my email list:

Thank you. Truly.

You’ve already received the first two chapters of the book. In the coming weeks, you’ll also receive a free 21-page companion workbook—practical exercises and templates to help you start your own advocacy journey.

If you haven’t signed up yet, you can do that here:

Join the list

I miss Liz. I miss Steven. I miss Jose.

I’ll keep missing them.

But the best thing I know how to do with that grief is keep going—keep writing, keep talking, keep showing up for this community the way they showed up for all of us.

Thank you for being here.

Tim

Tim McDonald is a healthcare advocate, author, and host of the Advocacy at Work podcast. “From Patient to Advocate: Turning Survivorship Into Impact” launches March 1, 2026.

Book launch party - March 12, Clearwater → RSVP

Join the email list → link

Listen to my conversation with Liz Healy → podcast link

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.

The transformation didn’t happen overnight, and it wasn’t always clear. I made mistakes, faced rejection, and often wondered if I was doing any of this “right.” But through trial, error, and the guidance of incredible mentors in the advocacy community, I discovered that there is a path from survivorship to meaningful impact.

That’s why I wrote “From Patient to Advocate: Turning Survivorship Into Impact.”

Releasing March 1, 2026, at the start of Colorectal Cancer Awareness Month, this book is the guide I wish I’d had when I started. It’s not just my story; it’s a practical roadmap for anyone who wants to turn their patient experience into advocacy that creates real change.

Inside, you’ll discover:

• How to find your authentic advocacy voice without comparing yourself to others

• Practical strategies for getting involved in research, policy, and community advocacy

• Ways to balance advocacy work with your personal life and health

• How to build meaningful partnerships with organizations and other advocates

• Tips for avoiding burnout while staying passionate about your mission

This book is for the newly diagnosed person wondering “what’s next?”, the long-term survivor ready to give back, and anyone who’s ever thought, “There has to be a better way to do this.”

Join the Pre-Launch Community

When you sign up for my pre-launch list, you’ll get:

• Exclusive early access to the first chapter

• Behind-the-scenes content about the writing process

• Launch day notifications and special offers

• Access to a community of fellow advocates

Sign up here

Whether you’re in the colorectal cancer community or advocating for any health condition, this book will give you the tools, confidence, and direction to make your advocacy journey more impactful, and more sustainable.

Your experience matters. Your voice deserves to be heard. Let me help you figure out how to use both to create the change you want to see.

See you on March 1st, Tim