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For years, Brody Kalk and his family lived with a diagnosis. What they needed was confidence in what came next.
Despite treatment close to home, the Indiana teenager continued to experience relapses from myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), a rare autoimmune neurological disorder that can affect the brain, spinal cord and optic nerves.
The disease disrupted school, affected his ability to walk and left his family worried about the future.
"I just felt like we were one relapse away from permanent damage," says his mother, Jennifer.
A diagnosis but not a solution
At 10 years old, Brody's medical journey began in 2020 after a serious illness led to neurological symptoms and multiple hospitalizations. Months of testing eventually led his neurologist to order a specialized antibody test for myelin oligodendrocyte glycoprotein (MOG), a test developed by Mayo Clinic researchers.
The result confirmed MOGAD, finally giving Brody's family an explanation for what he had been experiencing.
The diagnosis brought answers, but managing the disease remained an ongoing challenge.
Finding the right expertise
As relapses continued, Jennifer wanted her son to see physicians whose careers were dedicated to treating patients with MOGAD.
"Having somebody that knows about the disease versus somebody that's a specialist in the disease is two totally different things," she says.
That search eventually brought the family to Mayo Clinic in Rochester, Minnesota, and to Dr. Eoin Flanagan, a neurologist specializing in autoimmune neurological disorders, including MOGAD.
Mayo Clinic has helped shape the understanding of MOGAD through research, diagnostics and specialized care. Its contributions include launching the world's first multidisciplinary MOGAD clinic, which provides specialized care across Mayo Clinic's campuses in Rochester, Florida and Arizona. Mayo researchers also helped establish international diagnostic criteria that defined MOGAD as a distinct disease and have evaluated hundreds of patients with MOGAD, helping physicians and researchers better understand the disease and its long-term impact.
Before Brody's first appointment, Mayo Clinic physicians had already reviewed years of his medical records, imaging studies and treatment history.
"I was amazed at how thoughtful everybody at Mayo Clinic was," Brody says. "You weren't just another patient. They made you feel like you were their priority."
Patients benefit from Mayo Clinic's team-based approach, which brings together specialists in neurology, neuro-ophthalmology, neuroradiology, rehabilitation medicine, neuropsychology, urology, pharmacy and laboratory medicine across Mayo Clinic's campuses in Rochester, Florida and Arizona.
"We like to work as a team," Dr. Flanagan says. "Many heads are better than one, and a team approach really gets you further ahead than you do on your own."
Among the opportunities available was a clinical trial for patients living with MOGAD, reflecting Mayo Clinic's ongoing efforts to advance research into the disease. Brody chose to participate. The trial is evaluating satralizumab, an investigational treatment that targets a specific immune pathway involved in inflammation. Researchers are continuing to evaluate its potential role in treating MOGAD.
Helping others navigate MOGAD
In 2025, Brody attended MOGAD Patient Day, the first event of its kind hosted by Mayo Clinic. Led by Mayo Clinic physicians and researchers, the gathering brought together patients, families and experts from across the country to learn more about the disease and connect with others facing similar challenges.
By that point, Brody had spent years navigating MOGAD. At Patient Day, he found himself in a different role, helping other families who were just beginning their journeys.
He even participated in a patient panel discussion, answering questions and sharing his experiences.
Looking ahead
Today, Brody is preparing for his junior year of high school. He's looking forward to earning his driver's license, spending time with friends and planning for the future.
If he could offer advice to another young person facing a rare disease, it would be simple.
"Keep an open mind," he says. "There are always other options. Listen to your doctors, but advocate for yourself too."
Dr. Flanagan hopes stories like Brody's remind families that progress continues to be made for patients with complex neurological diseases.
"There is a lot of hope," Dr. Flanagan says. "We can make diagnoses that we couldn't make many years ago, and with clinical trials of multiple novel targeted treatments underway, the future is really bright for those with MOGAD."
