The Gleason Institute for Neuroscience was first proposed by WSU Spokane Chancellor Lisa Brown in late 2015. The purpose of the meeting was to gather stakeholders (Avista), health care providers (St. Luke’s), scientists (Elson S. Floyd College of Medicine and the Allen Institute for Brain Science) and Team Gleason and create a joint venture focused on ALS. What emerged from that discussion was the idea to create an institute focused on translational neuroscience.
In subsequent years and after further conversations with additional stakeholders, the Gleason Institute for Neuroscience began to evolve into its present form. By 2016, the basic outline of the Gleason Institute for Neuroscience was in place. It would consist of three units: The Discovery Research Unit (DRU), the Clinical Research Unit (CRU) and Adaptive Technology Center. The main goals of the CRU are to provide patient services (e.g. neurology, PT, OT) based on the VA system of care delivery and run clinical trials.
At that time, we also included in the CRCU what eventually became the Adaptive Technology and Smart Home unit (ATSH). The main goals of the ATSH are to a) provide housing for patients and families visiting the institute modeled on Matt’s Place, and b) be a place where patients could learn how to use adaptive technology (e.g. eye-gaze technology).
By the end of 2016, the DRU, CRU and ATSH had evolved into separate and independently managed units. By 2017, Chancellor Daryll DeWald decided that the Gleason Institute for Neuroscience would be a priority of his administration.
The institute follows a distributed model where the goals of each unit are achieved in existing space on the WSU campuses, facilities at Providence Health & Sciences and St. Luke’s Rehabilitation Institute, and the Sprague building. In addition, the Gleason Institute for Neuroscience will exist as a virtual institute on the web. The virtual institute can stand in for an actual building by providing seminars, interactive workshops, guidance to patients, families, clinicians, portals for collaborations and links to other units and a constantly updated information hub for the Gleason Institute for Neuroscience.
Diseases like ALS require an integrated and multifaceted approach.
First, there are no cures for ALS or medicines that improve quality of life for patients with ALS or related diseases. We lack these medicines because we don’t understand why brain cells die in diseases like ALS. Understanding the root cause of the disease is essential for discovering cures and ameliorative medicines. This requires a Discovery Research Unit dedicated to making these discoveries.
Second, basic discoveries about the brain cannot be translated to new medicines unless there are trained clinicians and clinical scientists that can test the efficacy of these medicines in patients. Even in the absence of medicines, much can be done to improve quality of life through physical therapy, speech therapy, and regular neurological screening. This all requires the Clinical Research Unit.
Third, although we lack medicines for ALS, we can improve the quality of life of patients and their families through the Adaptive Technology Center. Adaptive technology includes devices that allow patients to interact with the world, via connections to remaining motor function (e.g. eye-gaze technology) and in the future, brain-machine interface devices. Smart home technology refers to creating living environments and spaces designed around the special needs of patients with ALS and related diseases. They also may include telemetric devices that allow caregivers on-demand access to patient physiological information, around the clock. Therefore, a unit dedicated to providing this technology is an essential part of a multifaceted approach.
Integrative means that the leadership and members of the Clinical Research Unit, Discover Research Unit and Adaptive Technology Center will work together toward a common goal. The Institute’s administrative structure includes regular meetings with unit directors so that each unit is informed about progress and needs in every other unit. The resulting reports are delivered to the director and his/her administrative team. These reports are used, in conjunction with advice from the various standing committees, to shape investments and policies of the Gleason Institute for Neuroscience. The director and his/her team will also use these reports to craft short-term, mid-term and long-term high priority goals of the Gleason Institute for Neuroscience that harness all the resources of the three units.
The Gleason Institute for Neuroscience target audience is comprised of three groups. The first are patients and their families. The second are clinicians and caregivers that work with patients. The third are scientists working to discover new cures and medicines that alleviate symptoms and create new adaptive technologies.
The strength of the Gleason Institute for Neuroscience comes from this tripartite audience. This diverse group of individuals, dedicated to a common goal, makes the Institute unique and attractive to patients, donors, industry and academia.
In 2016, MOUs were signed between WSU, Team Gleason, Providence Health & Sciences, and St. Luke’s Rehabilitation Institute. Additional stakeholders include Avista and HSSA.
The Gleason Institute for Neuroscience focuses on motor neuron neurodegenerative diseases, such as ALS, Parkinson’s disease, Charcot-tooth and related, inherited neuropathies.
These diseases have been referred to as “ALS and the cousins.” They are cousins because they share dysfunction in motor neurons, they have similar defects in brain cells, and the therapy and care of these patients is similar because the major disorders stem from motor neuron disease.
In time, the Gleason Institute for Neuroscience can expand to including other nervous system motor diseases and the dementias. However, this initial focus simplifies the mission of each Gleason Institute for Neuroscience unit and maximizes current resources. Examining the cousins is also a strategy used by other institutes dedicated to neurodegenerative disease. They, as we, recognize that looking at a problem from many directions may more rapidly lead to a solution.