Understanding the disease
What is Progressive Supranuclear Palsy?
A rare, relentless neurodegenerative disease that affects movement, balance, speech, swallowing, vision, and cognition.
Progressive Supranuclear Palsy (PSP) is a rare brain disorder caused by the buildup of abnormal tau protein in neurons. It progressively damages areas of the brain that control movement, balance, thinking, mood, and eye movement.
Because early PSP is often mistaken for Parkinson's disease, most families endure years of misdiagnosis before finding answers. There is currently no cure, and treatments are limited — which is why research funding matters.
The average person with PSP is diagnosed in their 60s, and the disease typically progresses over 6–10 years. Falls, difficulty swallowing, and loss of speech are common — placing enormous demands on family caregivers.
The impact
How PSP affects the whole family
Neurological
Loss of balance, movement, speech, and swallowing takes independence away.
Family caregivers
Spouses and adult children become 24/7 caregivers — often leaving jobs to help.
Financial
Home modifications, transport, equipment, and travel to specialists add up fast.
Why California families need help
California has a small number of PSP-experienced specialists — often hundreds of miles from home. Travel, lodging, and specialized equipment costs add tens of thousands of dollars to a diagnosis that is already devastating.