The Bathroom Floor Moment That Started It All
JJ Singleton was 27 years old when he was diagnosed with colorectal cancer in September 2015. For years, he endured what most cancer patients don’t want to talk about: the relentless physical and mental toll that no amount of disease awareness campaigns seem to capture.
There was no makeup. No fresh clothes. No ESPN segment with inspiring music in the background.
There was just JJ, laying on the bathroom floor, covered in his own vomit after round after round of chemotherapy, watching professional athletes talk about overcoming adversity. He remembers thinking: nobody ever shows this part.
That moment, raw, unglamorous, and utterly honest, became the seed of a mission that would eventually transform how cancer advocacy is done in rural America.
Ten years later, JJ has become one of the most authentic voices in the cancer advocacy space, proving that impact doesn’t require polish, and that the most powerful stories are the ones we’re usually too afraid to tell.
A Life Saved by a Clinical Trial
JJ’s cancer journey followed the path that many stage four patients know too well: chemotherapy, surgery, progression. After the cancer spread through his abdominal wall and lymph nodes, he had exhausted all the approved treatment options.
A clinical trial saved his life.
But during those years of treatment, JJ lived on total parenteral nutrition (TPN), spending 23 hours a day in bed on infusions. He couldn’t eat. He couldn’t work. He could barely exist in any meaningful way.
“That was the rock bottom,” he recalls.
Mental health spiraled. The pressure to “shoulder it” as a man in rural Appalachia, to not let depression, anxiety, or darker thoughts show, nearly killed him faster than the cancer itself. Nobody warned him about this. Nobody told him it was normal or that it could be managed.
It took working on himself mentally, finding healing through community, and discovering that his story, especially the ugly parts, could mean something to other people. That realization became his exit from the darkness and his entry into advocacy.
Three Years of Saying “No” Before Everything Changed
When JJ was invited to apply for Fight CRC’s Ambassador program, he didn’t see it as an opportunity. He saw it as a formality. A way to say he tried so he could move on.
“I grew up in a small town in Appalachia,” he explains. “I didn’t think anybody wanted to hear what I had to say.”
He applied just so he could be done with it.
He got accepted.
That weekend in Missouri in 2021, when JJ and I first met at the airport, something shifted. He left that training thinking nothing would come of it. But emails kept arriving. Opportunities kept showing up. Someone asked if he wanted to join a Zoom steering committee. He said yes, not knowing what it was.
That one “yes” led to trips with major pharmaceutical companies.
That one “yes” led to partnerships with medical data companies.
That one “yes”—to something as simple as a 15-minute Zoom call—opened doors that showed him a different life was possible.
“I would tell myself that advocacy is a whole world put together,” he says of the advice he’d give his younger self. “There’s so many different avenues for it.”
Redefining What Advocacy Looks Like
When JJ first started his advocacy work, he thought it was all about fundraising. He wasn’t naturally comfortable with that approach, and he was concerned he didn’t fit the mold of what an advocate “should” be.
What he discovered is that advocacy isn’t a single lane. It’s a universe.
His focus became threefold: awareness, policy, and clinical trial advocacy. But beyond those categories, he realized his unique position, a young cancer survivor in rural Appalachia, gave him access to something most coastal, urban advocates didn’t: insight into how cancer impacts underserved populations.
Rural health disparities are real. Cancer centers are built around population centers. When you live in the mountains of West Virginia or Kentucky, you don’t have the same access to cutting-edge treatments, clinical trials, or even mental health support that someone in a major metropolitan area takes for granted.
JJ made this his mission.
While many advocates focus on policy and fundraising in visible, prestigious circles, JJ focused on something equally important: reaching the untold number of people in rural communities who would never set foot in a comprehensive cancer center.
The Courage to Share What Others Hide
One of the most striking aspects of JJ’s advocacy is his refusal to curate his story.
In a social media landscape obsessed with highlight reels, JJ posts about the bad days. He writes about suicidal thoughts. He talks about depression and isolation. He shares what it’s actually like to live with cancer, not what people want cancer to look like.
This wasn’t always well-received.
“I had pushback from people in my town,” he remembers. “They didn’t want to hear about the bad, the mental health, the suicidal thoughts.”
But he kept going. And as the culture slowly shifted, as people became exhausted by perfectly curated lives, his raw, honest storytelling resonated. What started as 20 likes on a post that terrified him to share now regularly reaches thousands of people.
But here’s what’s remarkable: JJ doesn’t do it for the engagement metrics.
“If it had 20 interactions or 2000 interactions, if it could help somebody at their darkest moment, then that means something,” he explains. “Once I accepted that, it didn’t matter. I just put out what I felt.”
This is the opposite of how most of us are taught to think about social media. It’s the opposite of how brands and influencers operate. And yet, it’s precisely this approach that has made JJ one of the most trusted voices in cancer advocacy.
The Economics of Advocacy: What Nobody Talks About
One of the most practical and important points JJ raises is something that rarely gets discussed: how do patient advocates actually afford to do advocacy work?
The romantic image of advocacy is that it’s a labor of love. And it is. But labor requires sustenance.
JJ is on Medicare and Medicaid. If he takes regular income, it can trigger benefits reviews that might disqualify him from the support he relies on. This creates a catch-22: he’s wanted by organizations, but he can’t simply accept payment without jeopardizing his health benefits.
“The biggest misconception is either you do it all on your own or you get paid for everything,” JJ says. “Neither is true.”
What works for him, and what he advocates for, is creative compensation:
Travel reimbursement doesn’t count as income for disability benefits, so covering flights, hotels, food, and transportation means he can afford to participate.
Smaller companies often offer gift cards or other non-cash compensation for consulting on projects.
Larger organizations can donate to the advocacy organizations he represents, which then provide him travel support.
Contractors are willing to work with you if you explain your situation. They want your expertise as a patient; most will find a way to compensate you ethically.
“They’re wanting to help because they want the information that you have as a patient and as an advocate. Most of the time they’re willing to help in whatever way possible,” JJ explains.
For anyone considering advocacy work while on disability benefits, this insight is critical. You don’t have to choose between financial stability and meaningful work. You just need to be transparent about your constraints and creative about solutions.
Why Companies Actually Care What You Think
JJ sits on multiple steering committees with major pharmaceutical companies. He watches how organizations use (or ignore) patient feedback. And he’s noticed a clear trend: the ones who listen get better outcomes.
“If they’ve actually listened to the patient and used their ideas and suggestions throughout the process, you can tell,” he says. “And if they haven’t, you can tell immediately. And that’s an automatic turnoff.”
But why do companies suddenly care about patient perspectives after decades of running things without them?
Trust. And necessity.
COVID shifted the ground. Patients’ trust in institutions fractured. Companies realized they needed patients not just as data points, but as partners and validators. Some of the largest pharmaceutical companies only started expanding their patient advisory committees after the pandemic, companies that previously had minimal patient input.
“They realize if they listen to our voice, that’s going to bring the newer patients,” JJ explains. “They’re going to be able to tell that we do put y’all first.”
This is still in the early stages. Patient-centered research and drug development remains a small percentage of the overall ecosystem. But the momentum is there. And advocates like JJ are helping pull organizations toward a model where patients aren’t an afterthought, they’re partners.
The Long Game: How Change Actually Happens
Legislative advocacy. Policy work. Research transformation. These things take time.
JJ knows this firsthand. He’s been advocating for a decade. Some of the policy work he’s involved in has had “minute victories,” small wins that seem almost insignificant in the moment.
But here’s what keeps him motivated: he can see the difference.
When JJ was diagnosed in 2015, the colorectal cancer screening age was 50. It’s now 45. Immunotherapy was just beginning to be explored for colorectal cancer when he was sick; now there are multiple options. The treatment landscape has transformed.
New patients today are getting options that didn’t exist when JJ was fighting for his life. They have more clinical trials available. They have better support systems. They have more drugs.
“I could see the whole process of everything our organizations and companies have been doing over a decade. How many more drugs are available, how much more support is there for cancer care in general,” he says. “That’s why I’ll never quit now because I’ve lived in a whole decade and I’ve seen the difference.”
This perspective, seeing the forest instead of just the individual trees, is what separates burnout from sustainability in long-term advocacy work.
Writing Like Your Life Depends On It (Because For Someone, It Might)
JJ writes consistently on social media. Not for metrics. Not for book deals. Not for validation.
He writes because he knows that somewhere, someone in their darkest moment is reading his words at exactly the moment they need to hear them.
When he first started, engagement was minimal. A few people liked his posts. Some people in his community actively discouraged him from sharing about depression and mental health. It would have been easy to stop.
But he kept going, because he had made a decision: he wasn’t going to let the number of likes determine the value of the message.
“Once I accepted that it didn’t matter if it had 20 interactions or 2000, if it could help somebody at their darkest moment, then that means something,” he reflects.
Today, his writing reaches far more people. But his approach hasn’t changed. He’s not chasing viral moments. He’s practicing a different kind of impact, the kind you can’t always measure.
What’s Next: The Vision for the Next Five Years
When asked where he sees his advocacy work heading, JJ outlines clear goals:
Better policy implementation - “Adapted and continuing to grow,” with meaningful change, not just token action.
Clinical trial transformation - More focus on accessibility, resources, and availability. Clinical trials are still conducted using decades-old processes; JJ wants to see that modernized and made more accessible, especially in rural areas.
Continuing on the frontline - Staying involved in research advocacy and helping shape how clinical trials are designed and executed.
Youth engagement - Continuing to reach young patients in the colorectal cancer space and across cancer types.
These aren’t modest goals. They’re the kind of work that takes sustained effort, partnership, and patience. But JJ has learned that patience paired with consistent action equals progress.
One Last Piece of Advice
If you’re listening and thinking, “I want to do what JJ does,” here’s what he wants you to know:
Do it. Even if it makes you uncomfortable.
You don’t need to be a natural public speaker. You don’t need to have all the answers. You don’t need to fit the mold of what an advocate “should” be.
What you need is authenticity. Consistency. And the willingness to say yes to opportunities that scare you.
“You don’t realize how much the community and what you’re doing will improve you as a person and your life,” he says. “I’ve met my very best friends through advocacy, and I’m a better person. And that helps me continue to do the work that’s improving the world too.”
Where to Find JJ
You can find JJ Singleton on Instagram or any social media platform by searching “JJ Singleton.” That’s where he shares updates, articles, videos, and the real, unfiltered story of what it means to be a young cancer survivor turned advocate in rural Appalachia.
Starting in 2026, he’s hitting the road with a full schedule of advocacy work and travel. If your path crosses with his at an event or conference, take the opportunity to say hello. You’re likely to meet someone who has genuinely changed the landscape of cancer advocacy. One honest post, one difficult conversation, and one “yes” to opportunity at a time.
If you’re considering advocacy work but unsure where to start, JJ’s story is a roadmap. It shows that impact doesn’t require a perfect story or a major platform. It requires showing up as yourself, sharing what others won’t, and saying yes to the opportunities that scare you.
And most importantly: it shows that clinical trials aren’t a last resort. They’re a critical part of the treatment landscape. If you’re facing a cancer diagnosis, talk to your provider about clinical trials from day one—not as a Hail Mary, but as part of a comprehensive approach to your care.
If you're interested in learning more about turning your own health journey into purpose and impact, subscribe to this Substack. Subscribers will be alerted first about the upcoming release of From Patient to Advocate: Turning Pain Into Purpose, coming this March for Colorectal Cancer Awareness Month.
