Because PSP is a rare disease, there is often a delay before the diagnosis is made. Without an early diagnosis and adequate information, families cannot anticipate the future course of the disease and therefore, are unable to plan. Furthermore, people with PSP may live hundreds of miles from each other and knowledgeable health care professionals, causing feelings of loneliness and isolation. As a worldwide organization, SPSP sponsors medical research and provides information, education, support and advocacy to persons with PSP, their families and caregivers. SPSP educates physicians and allied health professionals on PSP and how to improve care.
Contributions support the organization and medical research.
SPSP was founded in Baltimore, MD in 1990 and guided by the vision of David Saks and his wife Reba, a PSP victim, both of whom are now deceased. The Society's director and staff are under the administration of the University's Department of Neurology. The Society's honorary chairman is Dr. John C. Steele who lives on the island of Guam where he conducts research on diseases related to PSP, Parkinson's and Alzheimer's diseases. But, much more is needed . Inform SPSP of educational, informational, and financial resources in your community.