Professor Paul Tuite, MD, from the University of Minnesota Medical School’s Department of Neurology says that progressive supranuclear palsy (PSP) is a “rare disease”, but it’s more common than physicians may have previously thought.

The Division of Movement Disorders in the Department of Neurology was recently named a “Center of Care” by the CurePSP Foundation. 

What is PSP?

PSP is a degenerative disease involving the gradual deterioration of specific parts of the brain. This condition includes symptoms of loss of balance, slowing of movement, difficulty moving the eyes and dementia.

“What kick-started our research into this disorder was a family that presented with four siblings who developed PSP,” Dr. Tuite said. “There are likely genetic and environmental factors playing a role in this family, which is unlike most cases of PSP—where genetics are not thought to be a predominant factor.” 

This spurred research supported by fundraising for the family to try to help find a cause. To date, there is no clear genetic abnormality that has been discovered and surviving individuals in this family are convinced that these health issues may have been related to pesticide exposure in the 1950s and 1960s—many decades before they developed neurological symptoms. Unfortunately, Dr. Tuite says that proving or disproving environmental factors is an extremely difficult task, which is perpetuated by a lack of funding for this rare type of neurodegenerative disorder research.

What can be done?

While there is no known cure for patients with PSP, clinicians are looking to help individuals with PSP and their families to better manage the disease as it progresses.  

Dr. Tuite has been working with other researchers to develop novel treatments that address the abnormal brain changes that occur in PSP. In this disorder, there are structural changes happening in a crucial protein called, tau. In patients with PSP, tau begins to clump together within their cells, which ultimately, leads to cell destruction. These cellular changes result in a patient's loss of movement and thinking functions.

Researchers are working on ways to either prevent cells from producing the tau protein or to enhance the removal of the abnormal tau by using treatments that contain anti-tau antibodies (antibodies that bind to tau). While Dr. Tuite has been involved in several anti-tau research trials, they have not yet been proven effective.  

“We are not giving up hope,” Dr. Tuite said. “We just need to keep working on different treatment approaches and find the one that works.” 

What does this new designation mean?

The CurePSP Centers of Care network aims to help PSP and CBD (Corticobasal degeneration) patients find the best available, local or regional care.

The foundation’s mission is to increase awareness of these disorders by providing educational material to patients, caregivers and healthcare professionals, as well as local and regional resources for physicians seeking more information.

These Centers of Care are encouraged to collaborate in order to optimize standards of patient care and to establish hubs for clinical research trials across the system.

To learn more about the CurePSP Foundation and their other Centers of Care, click here.