Voice of the Veteran

In 2012, Ken Maxwell was sailing in rough seas on the Atlantic when, while below deck, he was thrown headfirst into an overhead wooden beam and was briefly knocked unconscious.

Ken, an Army Veteran, had trained as an infantry officer at Fort Benning and later served in the Army Reserves. He had served as an operations officer at Fort Sam Houston, home of Brooke Army Medical Center. He knew what an injury looked like. This one didn't look like much at first.

But back home in the North Carolina mountains about five days after the incident, Ken was unable to walk without falling or speak coherent sentences. After a thorough medical examination, he was confirmed to have suffered a traumatic brain injury.

Over the next few months, a hot, searing, deep pain occurred behind one eye. Then his face began to droop. At first, his wife thought he was having a stroke. Alongside the pain came a constant runny nose and a watering eye, symptoms that looked like seasonal allergies were flaring up. His allergist placed him on the strongest allergy medications and shot regimen possible without benefit. Separately, his primary care provider was treating his pain as a mysterious and unknown headache. No one initially connected the two sets of symptoms to each other or to the fall.

It was the start of a search for answers that would take more than five years.

"This Is Not a Headache"

Out of options, in January 2018, his allergist sent him to an Ear, Nose, and Throat specialist for a CT scan. The ENT physician finally diagnosed Ken with cluster headache. His last words to Ken were, "Your life has dramatically changed with this diagnosis. You need to learn all you can. There is no cure." Like many people who hear the term for the first time, Ken only heard the word "headache." He walked out frustrated. What he was living with felt nothing like a headache.

What changed things was a physician assistant in his primary care doctor's practice who had previously worked at Diamond Headache Clinic in Chicago. He had seen cluster headache and understood the severity of this fairly rare diagnosis. Ken's primary care physician and the P.A. helped Ken research the disease and begin the years-long process of understanding the condition. Ken credits his primary care provider for knowing the limits of her own experience and her desire to help her patient.

She referred him to a cluster headache specialist in the neurology department at Wake Forest University, a teaching hospital two hours from home. That neurologist became his primary physician for the disease. But by May 2018, Ken's cluster headache had become chronic.

Looking for a Safer Path

Ken found community and information through Clusterbusters, a patient advocacy group for people living with cluster headache. Through the group, he followed a research project at VA Connecticut studying psilocybin as a headache treatment. He learned about members who were experimenting with psychedelics on their own, following the protocol that had benefited a large number of cluster headache patients. But he was reluctant because he had zero experience with psychedelics.

"It just wasn't in my wheelhouse. No judgment on anybody else."

He wasn't willing to risk his health on guesswork. So, when Dr. Emmanuelle Schindler, the VA Connecticut neurologist leading the trial, called to ask whether he would consider joining, the answer came easily. The appeal was the setting: a hospital, with a research team that would be right there if anything went wrong.

The screening covered his full medical history, a psychological profile, and his mental health. Ken also made sure his Wake Forest neurologist knew. He wasn't asking permission. He just wanted her in the loop. He was 100% on board with the trial and his neurologist was supportive.

He later learned that the research team had been urgently looking for one more participant. "It just so happened to be a marriage that worked out great," he said.

Nine Days

Ken was approved in early March 2020. He was making his airline reservations, nine days from leaving for Connecticut, when COVID suddenly shut the trial down.

"That was pretty devastating at the time," he said. "I had a lot of hope that maybe we would figure out what's going on here, and I wanted to see if it would help me."

Someone in His Corner

It could have ended there. Instead, through the months that followed, Dr. Schindler kept in touch with Ken, long before she knew when, or whether, the trial would resume.

"Dr. Schindler, to her credit, stayed in touch with me all during that time, which was kind of a lifeline, really."

In September 2020, she was the one who called with the news: the trial was reopening, and there was a place for him. Ken became the first participant admitted after COVID restrictions lifted, and he went through the entire trial masked, at the VA hospital.

Six months after the October 2020 trial, Ken was invited back by Dr. Schindler for a second round of treatments in May 2021.

Psilocybin eventually broke a streak of 415 consecutive days of these severe attacks. He now has 8–10 days per month with no attacks, and his attacks per day have dropped from 3.5–4.0 to about 1.2.

Why It Matters

Ken's story shows what Veterans face with headache disorders: symptoms that are easy to mistake for something else, years spent looking for the right diagnosis, and a hunger for treatments that actually work. It also shows the difference one researcher can make. A rigorous clinical trial gave Ken a safe way to try something new. But it was Dr. Schindler, staying in his corner when the trial couldn't move forward, who kept him in it.

Ken will share the stage with Dr. Schindler at NAVREF's State of the Science: New Frontiers in Veteran Migraine and Headache Research on November 5, 2026, in Arlington, Virginia.

A Roof, and a Discharge

He enlisted in the Army at 18. Four years later he moved over to the Army Reserve, where he lasted about a year. Then the National Guard, 1986 to 1988.

Like a lot of Guardsmen, Gagne worked a civilian job alongside the uniform. His was roofing. That is where it happened: he fell off a roof and fractured his spine. The fall ended his service. He was discharged.

For a while, the injury looked survivable in the way people hope these things will be. His spinal cord had swollen, and when the swelling came down, he could walk.

The Long Reversal

Spinal cord injuries do not always announce themselves all at once. They compound. Over the years that followed, the secondary problems that come with a cord injury caught up with Gagne, and the strength he had left kept draining away. By 2012 he was back in a wheelchair for good.

It took Gagne awhile to find his way into a VA hospital. When he did, it was the James J. Peters VA Medical Center in the Bronx, home to one of VA's spinal cord injury clinics and to the VA Rehabilitation R&D National Center of Excellence for the Medical Consequences of Spinal Cord Injury, a research operation built specifically around the problems that were stacking up in his own body.

He settled in Yonkers, about a half hour's drive south of the hospital. He does not drive it. He takes public transportation, in the chair, and has for fourteen years. In all that time he has had the same primary care doctor.

"Everything I medically need, they give me. The wheelchair, the grabbers — everything."

The Room Across the Hall

Gagne did not go looking for research. Research found him in a hallway.

He was at the Bronx VA for a procedure, a test to determine whether something in his bladder was cancerous, when two people from the medical center's research service struck up a conversation with him. They had a study. It was 2012.

The study was about bowel control: how a spinal cord injury severs the signal that lets a person clench the muscles that hold, and whether those muscles could be strengthened again. It is not the kind of research that makes headlines. It is the kind that decides whether a person can leave the house.

He said yes. And then he kept saying yes.

The Jolts

The studies that followed have mostly circled the same question, which is the question the Bronx VA has spent years on: how much of the connection between brain and muscle survives an injury, and whether it can be woken back up.

That work looks like electrical stimulation delivered to the spinal cord and magnetic stimulation delivered to the brain, paired with targeted exercise, researchers hunting for the nerve pathways the injury spared and trying to drive traffic back down them. Gagne calls it "the jolts."

He has also worked with the walking technology the Bronx VA is known for: a powered exoskeleton that stands a person up and moves their legs, and treadmill-based gait equipment.

Somewhere between 2022 and 2026, one of the stimulation studies gave him something back. He had lost function in his fingers. Some of it returned.

That was never the deal. Nobody had offered it.

"They were very clear with me. They never told me it was going to fix anything for me. They said maybe it helps somebody later."

Somebody Down the Line

Fourteen years in, Gagne is a fixture in the Bronx VA's research service. The staff know him, he knows them, and each study has made the next one easier to say yes to. They invite him to the pizza parties. He is, functionally, part of the place.

"The more I did, the more I wanted to do. At this point they treat me like staff."

If someone were to ask him what all of it has been for, he doesn't talk about the science. He talks about the next veteran who comes through that door.

"Even if it never does anything for me, if it means the next guy who comes in here with a spinal cord injury gets something better than what I got, then it was worth doing."

March 4, 1991

He'll tell you exactly when it started. Not roughly, not approximately — exactly. March 4, 1991. Fifteen minutes after his unit demolished an ammunition depot in the Iraqi desert, Ron Brown's head was pounding. He couldn't breathe. His vision blurred. His nose was running and he was sweating like a faucet — in the middle of winter. He went to the medic. Got an IV. And never fully recovered.

Before that day, Brown was a peak-performing soldier: regularly scoring between 250 and 280 on his physical fitness tests, no problem on the two-mile run. He had joined the Army in January 1989, completed basic training and Airborne School, and served with the 82nd Airborne Division at Fort Bragg. He had deployed to Panama in December 1989 for Operation Just Cause, then to Operations Desert Shield and Desert Storm on August 16, 1990, serving through April 7, 1991. He had gone to the desert and done his job.

He came home April 7, 1991. He failed his PT run at 19 minutes. Road marches that should have taken under three hours were taking him longer, and he couldn't explain why.

"I was scared," he says. "I thought they'd put me out on something other than an honorable discharge."

Searching for Answers

As a lower-enlisted soldier, Brown didn't know he could have fought for a medical retirement. When President Clinton's reduction in forces offered him a way out a year early, he took it, spending the remainder of his contract in the active reserves while searching for answers about what had happened to his body.

Three weeks at Walter Reed produced clues but no resolution. Testing revealed he had lost lung volume. A CT scan with contrast appeared to show scarring on the outside of his lungs. Then, in 1997, the first letter arrived from the Department of Defense: there was a possibility that chemical munitions had been destroyed at Khamisiyah — the same site where his unit had conducted demolitions. A second notification came in 2000.

Brown took issue with the language. The letters said veterans "may have been exposed" to chemical warfare agents. But a 2004 DoD investigation used stronger language — that personnel in the hazard area were "likely exposed" — wording that carries more legal weight in VA adjudication. Brown spent the next decade fighting the DoD over that distinction. This past December, the DoD finally acknowledged it had used the wrong language in its original assessment.

It took him 13 years to get his Gulf War-related conditions service connected.

"It may not sound like much," he says. "But during that time, I knew nothing about VA policies or procedures. Lots of trial and error, denials, appeals. If you don't have PTSD before going through that process, going through it can give it to you. It is not user-friendly. And it can impact your health."

He didn't want other veterans to go through what he had. So, he became an advocate.

Into the Science

Today Brown takes 28 medications a day and uses three different inhalers and a nebulizer. But he hasn't just been a patient — he's been a participant. Brown has been involved in Gulf War Illness clinical trials since the mid-1990s, including a long-term doxycycline study that ultimately made his condition worse, and a carnosine brain imaging study through CDMRP. A CoQ10 study led by Dr. Beatrice Golomb at UC San Diego offered more meaningful results — improving his energy levels and cognitive function. It isn't a cure. But it helped.

The problem, as Brown sees it, is that promising findings rarely go anywhere. Pilot studies show results, and then nothing happens. Studies go unreplicated. A body of research that once encompassed hundreds of relevant findings gets winnowed down until it circles back on itself. But Brown is determined to make sure veterans don't have to go through what he did, and that the science doesn't stall on his watch.

He has been a peer reviewer for CDMRP since around 2014, sitting alongside medical professionals on panels and working twice as hard, he says, just to keep up with the terminology. He also sits on an advisory body, the Research Advisory Committee on Gulf War Veterans' Illnesses, though he notes the VA has been cutting committee staffing — another warning sign he isn't ignoring.

When the CDMRP Gulf War Illness program was cut from $30 million to $15 million, Brown started writing letters to the White House.

"CDMRP over the years has produced the largest amount of Gulf War Illness research that has shown promise," he says. "But we have pilot studies that show promise and are hardly ever replicated for verification."

For the Next Generation

More than three decades after March 4, 1991, Brown is still fighting — for answers, for funding, for the veterans who came home sick and still don't know why.

When asked what it would mean if the research were fully funded and finally succeeded, he doesn't hesitate.

"I'm hoping it produces a cure. But even if it's not a cure — if it gives veterans something that grants them a better quality of life, that's something. And even if it's not in our lifetime, there will be toxic exposures on the battlefield again. Maybe something will come from this that helps future generations. Our kids. Our grandkids."

Two Miracles

He'll be the first to tell you he wasn't entirely prepared for either one. Getting into West Point was a miracle. Getting out was another. But what happened in between — and in the decades since — shaped a man who now carries the flag for something far bigger than himself.

After earning his commission, he served 22 years in the U.S. Army: a first tour in Korea, then two tours in Vietnam commanding infantry rifle companies. He rose through the ranks not by claiming he was qualified, but by refusing to stop working.

"All I knew how to do is work, show up, work," he says. "I've never been qualified for any job I've ever had, including getting into college." It's said with a laugh, but there's a lesson underneath it — the kind of stubbornness that wins wars and, it turns out, fights disease.

A Chance Encounter at the VA

After retirement, Sonny settled in Charleston and found himself drawn back into the orbit of the VA. Then came the moment that changed everything.

He was waiting for a dental appointment when he noticed a table set up nearby. Some young women were recruiting volunteers for something — an Alzheimer's study.

"I didn't think I had any," he recalls. "But the one thing I'd learned with all the other medical things I'd been through is: if something's wrong, face up to it. Go and get it fixed, because you're not getting any younger."

He signed up. And that decision, made in a waiting room on an ordinary afternoon, put him at the front of something extraordinary.

Getting a Head Start

At the time, diagnosing Alzheimer's with certainty was nearly impossible — definitive confirmation required examining the brain after death. Clinical trials were working to change that, and Sonny became one of the early participants.

"Because of that clinical trial, I was one of the first people to start getting medicine for that — infusions," he says. "So I had a head start."

Today, Sonny describes himself as "relatively normal." He misplaces his iPhone. He occasionally forgets where he put his car keys. New names take a moment to stick. But he is here. He is sharp. And he credits it, in large part, to getting into a trial when the research was still young.

Carrying the Flag

Not everyone has responded the way Sonny did. He has friends who got a diagnosis and went quiet. Who decided they didn't want to know more. He understands the fear — and he rejects it on their behalf.

"Dude, you either got it or you don't got it. And if you do got it, you need to have something happening and you need the best latest thing you can get. And you can get that through the VA."

That directness — veteran-to-veteran, plain and unvarnished — is exactly why he keeps showing up. He has been in a handful of clinical trials now, some of which didn't pan out. But even those, he says, gave him something valuable: regular check-ins, vital monitoring, a team of people paying close attention.

"You get somebody you walk in and get your vitals checked, and if anything is going off course, they'll pick that up," he says. "I really think that it's opportunity all the way around."

Access That Otherwise Wouldn't Exist

Sonny is particularly emphatic about one thing: clinical trials give retired military personnel access to cutting-edge medicine they probably wouldn't otherwise have. Not through bureaucracy or luck, but through participation — through saying yes when someone sets up a table in a VA waiting room.

"There are a lot of people who would like to get into various trials," he says. "They just don't know how."

Sonny knows. And he keeps telling anyone who will listen.

Early Years and a Dream to Serve

From toy soldiers in San Francisco to "war games" in the Louisiana bayous, Patrick Simon's childhood foreshadowed a life devoted to service. When his family relocated to Louisiana to care for his grandfather, the city streets gave way to muddy rivers and dense swamps that became the perfect training ground for a boy determined to become a soldier.

Those early lessons in adaptability and perseverance shaped his future. "We were warrior swamp kids," Patrick recalls. "That upbringing gave me an advantage when I arrived at Fort Polk's 'Tigerland' during Vietnam training. I was comfortable in the mud."

Answering the Call

After high school, Patrick enlisted in the U.S. Army. He joined during a period of rapid modernization, deploying one of the first Army Tactical Communications Control Systems (TACCS) before Operation Desert Storm. While assigned to the U.S. Army Corps of Engineers in San Francisco, he played a key role in disaster response during the 1989 Loma Prieta earthquake, earning the Army Commendation Medal for Heroism.

Discovering a New Mission Through Research

When Patrick retired, the transition to civilian life brought chronic pain, knee injuries, and the invisible weight of PTSD. At the Palo Alto VA, he enrolled in a research program using meditation and yoga to manage pain and stress. What began as a way to ease discomfort evolved into a turning point. He later joined PTSD workgroups in Palo Alto and Chicago — and the tools he gained still help him today.

Now a board member with BRCI and an active part of NAVREF's national community, Patrick bridges the gap between research and the veterans who need it most.

A Sharp-Eyed Doctor in Wilmington

In 1967, Robert Porzio stepped onto the bus to basic training. Decades later, now living in Wilmington, North Carolina, a thorough VA doctor named Dr. Hernandez recommended annual lung monitoring because of Robert's smoking history. Three years into those screenings, a nodule showed up. Then another. That precaution likely saved his life.

A Call from Durham

A CT scan at Durham VA confirmed lung cancer — but caught incredibly early. Robert qualified for the VALOR Study, a VA research initiative improving early detection and treatment for veterans with lung cancer. He opted for a cutting-edge high-precision laser treatment, minimally invasive and incredibly effective.

"The treatment itself was astonishing. They used lasers — something they usually use for brain cancer. There are no signs of it today. None."

Today, Robert's lungs are clear. He champions the VA at every opportunity: "The care I've gotten from the VA is better than anything I've seen in private healthcare."

Facing the Past

Jennifer Butler proudly served with the Army National Guard, deploying to Afghanistan in 2012–2013. When she returned, a new battle began. By 2013–2014 she had reached a critical point and began seeking help at the Charleston VA Medical Center, where therapist Stephanie introduced her to prolonged exposure therapy.

The process was intense — recording herself recounting traumatic experiences, listening back, journaling, and confronting avoided situations in daily life. It was painful. It was also life-saving.

Steps Toward Healing

Today, Jennifer can go to concerts and attend large sporting events — experiences that once seemed unimaginable. She's currently participating in a VA research study at Charleston focused on sleep and its connection to PTSD, continuing to give back to a system that gave her so much.

A Routine Visit That Changed Everything

Betzaida Ingram served nearly 12 years in the U.S. Army before enrolling in VA health care for the first time in 2021. During a routine check-up in 2023, a lung cancer screening revealed a mass in her upper left lung. Her specialist introduced her to the VALOR Study at the Baltimore VA — a pioneering initiative to improve treatment options for veterans with lung cancer.

A Pivotal First

Betzaida became the first successful randomization at the Baltimore VALOR site — and the only woman and only Latina enrolled there at the time. Following surgery to remove the upper lobe of her left lung, she spent just two nights in the hospital. Within five weeks, she was nearly back to normal. Today, she feels better than she did before.

Her two-year surgery anniversary arrives in July 2025 — a milestone she never imagined when she first walked through the VA's doors.

A Mysterious Spot

Laurie Smith served 20 years in the U.S. Army. In 2021, a routine lung cancer screening found a spot on her lung — but civilian care couldn't identify the cause. For over two years she lived on a watch-and-wait plan with no answers.

A Turning Point Through VA Research

In December 2023, Durham VA Medical Center reviewed her history and ordered a biopsy. The result: lung cancer — adenocarcinoma. As a full-time caregiver for her husband, a fellow disabled veteran, Laurie couldn't afford lengthy surgical recovery. The VA gave her options. She chose precision-guided radiation therapy that allowed for minimal downtime — tailored to both her health and her life.

"VA research didn't just give me options. It gave me control over my care and my future."

Struggling with PTSD

Chris Blomgren spent his life serving others — as an Army nurse, firefighter, and medical professional. Yet despite his dedication, he struggled silently with PTSD and major depressive disorder. Years of treatments and medications offered little relief.

Discovering the Stellate Ganglion Block Study

Chris heard about the SGB study on social media. He applied, secured a spot, and drove through the night to the Minneapolis VA. Initially, he felt no change. But within weeks, his mood lifted and he began regaining control of his life.

Today he remains on a minimal dose of one medication while continuing to track his mental health through apps and VA follow-ups. And he advocates for a simple but powerful idea:

"Veterans shouldn't have to chase down life-changing research. Research should find them."