Jud Kimmel spent most of his career in public policy and finance.
He wasn’t a scientist. He wasn’t a doctor. He wasn’t someone with a natural pathway into cancer advocacy.
Then in September 2022, almost four years ago, he got diagnosed with stage 4 grade 3 small bowel neuroendocrine tumor.
And everything changed.
The Symptoms Nobody Names
The weird part is that the symptoms that got him to his diagnosis were so strange and confusing that nobody could quite figure out what was happening.
He had gastrointestinal problems that came and went randomly. Out of nowhere, he’d get shortness of breath without any exertion. He’d have facial flushing, hot and intense, but without any sweating.
These weren’t the kind of symptoms you type into Google and get a clear answer. These weren’t “go to the emergency room right now” symptoms. These were the kind that made everyone scratch their heads.
What he later learned was that these were symptoms of carcinoid syndrome.
His neuroendocrine tumor was functional. That means it was secreting hormones into his bloodstream. And those hormones created this strange collection of symptoms that led doctors to his diagnosis.
“In some ways,” Jud says, “I’m thankful I had a functional NET. A lot of people, their NETs will grow and grow with no signs at all until they cause a physical obstruction or some other acute problem.”
So the symptoms that made his life miserable for over a year? They probably saved his life.
What NET Actually Is
Here’s the thing. Most people hear “neuroendocrine tumor” and their brain shuts down.
It sounds like brain cancer. It sounds like something your neuroendocrine system—which is in your brain, right?—is attacking.
But that’s not what NET is.
You have neuroendocrine cells all throughout your body. They’re in your gut. They’re in your lungs. They’re in various organs. When those cells go rogue, that’s when NET develops.
It’s not a tissue cancer. It’s a cancer that forms from neuroendocrine cells. And it’s a solid tumor, but it’s distinct from other kinds of cancers.
The umbrella term is NEN, neuroendocrine neoplasia. Under that umbrella, you’ve got NETs and NECs and insulinomas and all sorts of other variations. But they all have one thing in common. They form from neuroendocrine cells that started misbehaving.
Historically, NET was considered rare. And it was. But incidence is increasing. Some of that is probably better imaging and better testing. But a lot of it is probably that NETs went undiagnosed for years. People were told their symptoms were something else. And even after death, it wasn’t always attributed to NET.
That’s how misunderstood this cancer has been.
The Specialist He Found
Jud was fortunate in one crucial way.
His diagnosing oncologist, a general community oncologist, knew enough about NET to know he needed to see a specialist. And he referred Jud to a NET specialist at Mayo Clinic.
This is unusual. A lot of NET patients go a very long time before they ever see a specialist. Some never do.
But Jud got that referral quickly. And very soon after his diagnosis, he was enrolled in a clinical trial.
His first line of treatment was radioligand therapy, or RLT. This was cutting-edge nuclear medicine. Not traditional chemotherapy. Not radiation therapy as most people understand it.
Nuclear medicine imaging that could help target cancer cells. And then nuclear medicine therapeutics to treat those cells.
It was a whirlwind introduction to being a cancer patient. And it sparked something in him.
Curiosity.
When Lightning Struck
For a while after his diagnosis, Jud did different things on different tracks. He was involved in clinical trial advocacy. He was learning about radiotheranostics. He was connecting with other cancer patients, especially men.
But the real moment came in 2024.
Novartis asked him to speak at a full team meeting. Everyone involved with radioligand therapies. Doctors. Scientists. Researchers. Marketing teams. Operations teams. All of them.
Jud shared his journey. How he’s doing. His perspectives on receiving this treatment and what it meant for his life.
And afterward, something happened that he didn’t expect.
So many people told him they’d never met a patient before. They’d never seen the actual human impact of their work. They’d spent years developing drugs and therapies and strategies. But they’d never sat in a room with someone who had actually received what they’d created.
“It was kind of like lightning struck,” Jud says. “Afterwards, so many people told me how they had never met a patient before, and it was so powerful for them to see how their work is actually helping people.”
That moment changed how he saw his role.
Three Areas of Focus
Now Jud focuses on three main areas of advocacy.
Neuroendocrine cancer: He’s a patient. He’ll be one for the rest of his life. Stage 4 NET is considered incurable but treatable. He’s learned a lot of fellow patients. He sees the need for support, awareness, education. He does peer education and counseling. He’s involved with scientific research and advocacy specific to NET.
Radiotheranostics: This is the umbrella term for the therapy he received. Nuclear imaging like PET scans combined with nuclear medicine therapeutics. It’s a fascinating and really exciting area of cancer research. But there’s a real lack of understanding and confidence around it in the patient community. And beyond that, it’s expanding to colorectal cancers, breast cancers, lung cancers, brain cancers. Nuclear medicine is about to explode with new applications.
But patients are afraid of nuclear radiation. Of course they are. And they don’t understand what radiotheranostics actually is. So Jud’s mission is to help patients understand it. Not to cheerleader for it. But to give them the information and context they need to make informed decisions.
“The name of the game for me,” he says, “is we know we all have emotions and perceptions and other psychosocial challenges that might come into play, but if I can help to move the needle and help patients have a little more trust and understanding with what nuclear medicine is about, I think that will go a long way.”
Men’s cancer peer support and wellbeing: Jud doesn’t have prostate or testicular cancer. But he knows that men isolate more than women do when facing cancer. Men have more psychological and relational challenges. Jud struggled with depression early on. He felt like he had to just suck it up and deal with it. Now he’s committed to being there for other men going through it.
How He Got Started
Jud didn’t wake up one day planning to be a cancer advocate.
He was part of a clinical trial that sparked curiosity. He started following scientific developments. He attended conferences. He watched webinars. He read journal articles. And because he was public policy and finance guy, he started thinking about how this research gets funded and moved forward.
Then he got asked to speak at Novartis. And that became the spark that lit everything.
He was recently asked to join the ECOG Akron Cancer Research Group’s patient advocacy committee. So now he’s part of cancer research discussions about all kinds of GI cancers, especially NET.
And next March, he’s speaking on a panel at the World Theranostics Conference in Osaka, Japan. His bucket list place. His cancer advocacy is literally taking him around the world.
But here’s what matters. None of that would have happened if he’d said no to Novartis.
“It just took that one time,” he says, “to really change the course of how I see myself in the cancer universe, and it’s incredibly gratifying.”
The Bridge Builder
What Jud sees as his real strength is something different from the science or the research knowledge.
He sees himself as a bridge builder.
There’s a gap between patients and researchers. Between patients and pharma. Between patients and the healthcare system. And a lot of well-intentioned people think if they just provide good, accurate information, patients will accept it and act on it.
But that’s not how humans work.
We all come from different experiences and perceptions. That influences how we take in information. How we act on information. There are barriers to activation and confidence and action. Emotional barriers. Trust barriers. Communication barriers.
Jud’s work is about building those bridges.
“I think there’s a lot of people in the cancer world, the oncology world, whether they be healthcare providers or pharma or other stakeholders that believe if they just provide good, accurate information to patients, patients will accept it and make it happen. And we know that’s not true. And so that pertains directly to my own personal advocacy is trying to build those bridges so that we get to more patient trust. Not blind trust, but informed trust and good health, both physical and emotional health.”
The Thing Nobody Knew
Jud comes off as polished. Competent. Confident.
But for a long time, he was actually very insecure.
A lot of that confidence was performance. His self-worth came from performing well. From being the guy who had it all figured out.
And then cancer happened.
And advocacy happened.
And somewhere in that process, he discovered that he had value just for being himself. Not for performing. Not for looking like he had it all together.
“It’s kind of exciting that I feel like my cancer advocacy is kind of an outgrowth from that understanding,” he says. “So kind of a later in life understanding.”
That’s the real transformation. Not from sick person to survivor. But from performing competence to actually being comfortable in his own skin.
What He Wants to Build
If Jud had unlimited time, money, and resources, what would he do?
Two things.
First, more funding for early stage cancer research and translational research.
“I worry about the direction we’re going as it relates to the innovation and the creation of new approaches and pathways towards more effective and less toxic cancer treatments,” he says. “We have a lot of really great stuff that’s in the pipeline now, but that was due to the early stage work that was done 10, 15, 20 plus years ago. And I worry that when we’re 10, 15, 20 years from now, we won’t have some opportunities because of the current state of the world.”
Second, he wants people to understand that we all come from different experiences and perceptions. That we need to build bridges of understanding and trust. That providing information alone isn’t enough.
We need connection.
Favorite Things
Blue is Jud’s favorite color.
Bruce Springsteen is his musician. He’s got eclectic taste. Jazz. New wave from the 1980s. Classic rock. But Springsteen is at the top.
Japan is where he wants to go. It’s his bucket list place. Japanese culture. Japanese food. And now, because of his advocacy work, he’s speaking at the World Theranostics Conference in Osaka next March. His cancer work is literally taking him there.
And the thing most people don’t know about him is that he was insecure for a long time. Performing competence. Now he’s found comfort in being himself.
Connect With Jud
You can find Jud’s work in several places:
Website: NENfolk.org (currently in development) His new clearing house for quality information on neuroendocrine cancer and radiotheranostics. Also has information about his advocacy work.
Facebook: Neuroendocrine Cancer Event Hub A group with a calendar of upcoming neuroendocrine cancer patient educational events and opportunities, both online and in person.
Work: ECOG Akron Cancer Research Group patient advocacy committee, speaking engagements with pharma and industry groups.
You can contact him through either the website or Facebook group.
Final Thoughts
Jud Kimmel was a finance guy who had a clinical trial, a diagnosis, and a strange collection of symptoms that nobody could quite explain.
He became someone who bridges the gap between patients and the people who develop treatments. Between fear and understanding. Between performance and authenticity.
He’s not a scientist. He’s not a doctor. He’s not someone who looks like he belongs in the cancer research world.
But maybe that’s exactly who we need. Someone who remembers what it’s like to be confused and scared. Someone who can translate complex science into human understanding. Someone who knows that we can’t just give people information and expect them to act on it. We have to build trust first.
That’s what Jud is doing. One conversation at a time. One Novartis meeting at a time. One Facebook group event at a time.
Building bridges where fear and understanding can meet.
If you’re facing a neuroendocrine cancer diagnosis, or if you’ve been told about radiotheranostics and you’re scared or confused, Jud’s resources are there for you. NENfolk.org is coming. The Facebook group is active. The information is designed to help you understand, not to push you in any direction.
Just to help you trust that you’re making an informed decision.
