In less than three years, the Steve Gleason Institute has become a leading center for helping clients and their families with neurodegenerative diseases in the Inland Northwest and beyond, says Dr. Kenneth Isaacs, director of the institute.

The institute also has established two other “pillars of function,” which include supporting and advancing the latest research and technology, and providing a teaching facility for students to work with people with neurodegenerative diseases, Isaacs says.

While the Gleason Institute is part of the Washington State University Spokane Health Sciences campus, which is home to the university’s Elson S. Floyd College of Medicine, it also works with students from Spokane community colleges, Whitworth University, Eastern Washington University, and the University of Washington-Gonzaga University Regional Health Care Partnership.

“It’s all about education,” Issacs says.

The institute is named for former WSU and New Orleans Saints football player Steve Gleason, who was diagnosed with amyotrophic lateral sclerosis in 2011. While the terminal neuromuscular disease has left Gleason immobile and reliant on eye-controlled technology to communicate, his ongoing work to raise public awareness of ALS and funding to help those with the disorder live rewarding lives has been the inspiration behind the institute, according to WSU.

Gleason, who was awarded a Congressional Gold medal in 2019, will receive the Arthur Ashe Courage Award for contributions that transcend sports on July 11 at the ESPN 2024 Excellence in Sports Performance Yearly, or ESPY, award program.

ALS is among a family of neurodegenerative diseases that typically are progressive disorders with no current cure that result in loss of motor function and coordination.

“Right now we’re focusing on disorders such as ALS, spinal cord injury, Huntingon’s disease, and some Parkinson’s as well,” Isaacs says.

The Journal last reported on the Gleason Institute when it opened in late 2021.

So far this year, the institute has averaged over 100 visitors a month, including those affected by neurodegenerative diseases, caregivers, middle school to college graduate-level students, and working professionals.

The Gleason Institute has provided over $200,000 in seed grant funding to develop adaptive technologies, support research in how neurodegenerative diseases develop, and evaluate the effectiveness of potential new treatments.

It’s headquartered in a 4,900-square-foot building owned by Spokane-based Avista Development Inc., at 325 E. Sprague.

Much of its space is occupied by the institute’s Adaptive Technology Center, which helps families explore ways to incorporate assistive technology to encourage independence for people with neurodegenerative diseases and their families.

The Adaptive Technology Center, which is led by the institute’s program manager Theresa Whitlock-Wild, is designed to demonstrate adaptive systems and has showrooms with examples of residential structural modifications, home-automation devices and systems, and mobility technologies.

The center also is testing out new communications technologies, including a wearable eye-gaze controller that can operate computer applications, and voice cloning that can convert text into a client’s voice.

For example, Whitlock-Wild shares an anecdote of a client whose neurodegenerative condition had long robbed him of the ability to speak. However, he could still make audible utterances with appropriate tones and inflections that were paired with a brief voice recording from when he could speak. When the voice-cloning application generated new voice communications from his live texts, his wife was brought to tears because it was the first time she had heard his voice in years.

“If you think about losing your voice, it’s part of your personality,” Whitlock-Wild says. “So we’re helping families understand that as (clients) lose these functions, we can help supplement alternatives.”

Whitlock-Wild, whose husband Matt Wild was diagnosed with ALS in 2015, also is the co-founder of Matt’s Place Foundation Inc., a Coeur d'Alene-based nonprofit that provides resources and housing to people diagnosed with ALS. See story on page 21.

The Gleason Institute hosts support groups for people and their families with neurological disorders who gather in person and online.

“We have people who attend from Montana, Western Washington, southern Idaho, as well as in this area,” Whitlock-Wild says.

Support services provided to clients, their families, and caregivers are covered by WSU, she says. “It’s not something that’s a billable service,” she says.

The 2023 operating budget for the Gleason Institute was $340,000.

“WSU Spokane Chancellor Daryll Dewald has assured us that this is one of his highest priorities,” Whitlock-Wild says.

She contends that the institute with its attached Adaptive Technology Research Center is unique in the U.S. “There are components of this at other universities, but nothing this expansive.”