The Accidental Advocate (Before He Got Sick)
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.
