By Michelle Jaffee
One day during his first year of graduate school, Tyler Nelson sat back from his microscope and planted his feet to stand.
But for some reason, his legs just wouldn’t work.
“It was like this for five minutes,” recalls Nelson, then a neurobiology student, “and I was very scared.”
Finally he was able to rise, but then pain kicked in, leading to three days so painful that he was limping.
Over the next few years, Nelson morphed from being a competitive runner to a 20-something coping with recurring instances of muscle weakness, paralysis and pain.
Thus began a medical quest including scans, exams, blood tests and more in search of a diagnosis and potential treatments. Answers couldn’t come fast enough: The simple act of walking his dog led to a sudden, hard fall that broke his pointer finger and necessitated emergency surgery.
For Nelson, it was the start of a new way of life, and a new career path.
Once he learned the diagnosis was a rare neuromuscular condition called periodic paralysis — a group of genetic disorders causing sudden attacks of short-term muscle weakness, stiffness or paralysis — he became laser-focused on understanding how it works and discovering better treatments.
His pursuit would bring him from the University of Pittsburgh to the University of Florida’s McKnight Brain Institute and the lab of his mentor, pain researcher Rajesh Khanna, Ph.D.
A meeting of the minds
A conference known as North American Pain School first brought Nelson and Khanna together.
It was 2022, two years after his diagnosis, and Nelson was among select trainees invited to attend the intensive workshop outside Montreal led by internationally recognized pain investigators.
At the time, the Youngsville, Pennsylvania, native was finishing his doctorate in spinal cord microcircuitry of neuropathic pain, and he’d secured a competitive early-career grant to support his research from the National Institute of Neurological Disorders and Stroke.
Among the presenters was Khanna, a world expert in sodium ion channels, a type of protein found in cells throughout the body that sets pain in motion. When Nelson took his seat in the audience, he expected a typical scholarly talk, but Khanna’s innovative approach to block pain sounded different.
“I thought, ‘He’s going to cure pain,’” Nelson recalls. “I want to work for this guy.”
Afterward, Nelson waited for a chance to introduce himself.
“He had probing questions, things that you would only know if you were really thinking deeply about these topics,” Khanna recalls.
Within months, Khanna recruited both Nelson and Nelson’s partner, fellow pain science trainee Heather Allen, Ph.D., to his lab at New York University. Allen works on an area of the brain called the parabrachial nucleus, which is the hub for pain signaling.
“The two of them, Heather and Tyler, are among the best scientists I’ve had the honor to work with,” Khanna says. “They are super hardworking.”
A new research direction
Under Khanna, Nelson both broadened his scope and carved out a new research niche, focusing on the type of pain associated with his disease as well as other neuromuscular diseases, such as myotonic muscular dystrophy and myotonia congenita.
“I want to learn more about my genetic mutation and help others,” he told Allen. “This is what I suffer from, and this is what I want to do.”
Allen, who had been his partner both in and out of the lab since their undergrad days at Wofford College, witnessed a transformation.
“He is vehemently passionate,” Allen says. “What he hopes is to keep dissecting, further and further, to figure out the biological mechanisms so we can better understand the disease, and that will allow us to better treat it.”
Nelson devised a project and funding proposal and approached Khanna, explaining how he’d uncovered a history of the disease in his family.
His mentor’s eyes lit up.
“Holy cow, man. We’re going to study this so hard,” Khanna told him.
Nelson was awarded a development grant from the American Neuromuscular Foundation in 2023 and used the funding to develop a mouse model carrying the same genetic mutation he has, in a gene called SCN4A.
In January 2024, when Khanna moved to UF to lead the new Center for Advanced Pain Therapeutics and Research, Nelson and Allen joined him.
And this year, Nelson’s efforts were recognized with two significant national awards: the Best Abstract Award and the President’s Research Initiative Award from the American Neuromuscular Foundation. He received the awards at the American Association of Neuromuscular & Electrodiagnostic Medicine annual meeting in San Francisco in October.
“He is driving his science, and I’m here for the ride and to learn with him,” Khanna says. “He and Heather are driving me into new frontiers.”
Furthering the cause
Now 32 and a postdoctoral research assistant scientist in Khanna’s lab, Nelson continues to experience daily pain, mostly in his calves and shoulders.
In the lab, it fuels his painstaking efforts with mouse data and genetically modified cells — efforts he hopes will reveal new drug targets.
Outside the lab, it fuels his drive to build community.
In October, he and Allen attended the annual conference of the Periodic Paralysis Association in Orlando. Moved deeply by the experience, he joined the nonprofit’s board of directors.
Cienna Ditri, board president, says Nelson’s scientific background and passion create “the perfect bridge” to connect advocates, scientists, patients and family members.
“Periodic paralysis is one of those conditions that, for the longest time, people didn’t believe was painful because they didn’t know enough people who had it,” Ditri says, noting only an estimated 4,000 Americans carry the diagnosis.
At Nelson’s invitation, she and three other representatives of the group — and a service dog named Fozzie — came from as far as Maine and Michigan to tour the lab in November and see his work in progress.
“He’s doing research to change what it’s like to live with this condition and help people be understood, especially the experience of pain,” Ditri says.
As the visitors wrapped up their tour, each thanked Nelson for his efforts. One asked if he could bring back a diagnosed family member and repeat the tour.
“What Tyler is doing,” says Ditri, “has the potential to change the entire world for people living with periodic paralysis.”