Man taking part in PMDC clinical trial hopes study unlocks answers on treating PSP

By Sean Gorman

A couple years ago, Jeff Strano could tell his balance didn’t seem quite right as he walked. “My gait was a little off,” Strano says. “I was kind of dragging my left foot. I was kind of lethargic. I had a lot of anxiety and stress.”

Strano, 55, was initially diagnosed with Parkinson’s disease, but that determination didn’t end the search for the underlying cause of his symptoms. His Parkinson’s medications didn’t seem to be having much effect, so he went to another doctor for more testing that revealed a new finding.

“He specializes in Progressive Supra-nuclear Palsy, and he recognized some structures in my brain were abnormal,” Strano says.

In January 2024, Strano learned that testing showed he does indeed have Progressive Supranuclear Palsy (PSP), a rare neurodegenerative disease. With no known cure and a lack of drugs available to treat the disorder, Strano searched for clinical trials on the website for the Cure PSP nonprofit group.

That led him to the VCU Parkinson’s and Movement Disorders Center (PMDC), where Strano is taking part in the center’s first PSP clinical trial to test a treatment being developed to stall the onset of PSP and symptoms that can include problems swallowing, muscle stiffness, balance problems and other issues.

“I hope the treatment slows the progression of the disease because it seems like it’s moving pretty quickly,” Strano says of the disorder’s impact on him.

Known as the ORION trial, the study is looking at whether the investigational drug, called AMX-0035, is safe and effective at treating PSP. The PMDC is one of numerous locations in the U.S. and Europe that are taking part in the trial.

About 110 patients across all the trial sites will be part of the initial phase of the study, says Matthew Barrett, M.D., the study’s principal investigator at the PMDC. About 75% of those patients have been enrolled in the study. If the preliminary results are positive, Barrett says an additional 600 to 800 patients will be added into the clinical trial.

Barrett says researchers hope to find a treatment that can slow PSP and its impacts on patients. Among the reasons the center was chosen to be part of the study, Barrett says, are the clinics that the center runs for PSP patients in Short Pump as well as the PMDC’s designation as a CurePSP Center of Care that provides high-quality care for those with the disorder.

“It’s critical for patients to participate in clinical research,” Barrett says. “Without that, we can’t improve the available medical treatments for patients.”

Strano started taking part in the trial in September, traveling from his Springfield, Va., home to the PMDC for motor skills exams, cognitive evaluation and other testing. As someone living with the disorder, Strano knows his experience can help researchers get valuable insights during the clinical trial. “It’s a rare disease, and there’s no known cure as of now,” Strano says. “I want to do anything I can do to help people learn more about how to treat it.”