Progressive Supranuclear Palsy and Brain Donation
Progressive Supranuclear Palsy (PSP) is the second most common of the four atypical parkinsonisms and exists in two main variants: Richardson’s syndrome (PSP-RS) and PSP-parkinsonism (PSP-P).
Depending on whom you are talking to, it is classified as an atypical parkinsonism disorder, a non-Alzheimer’s dementia, a type of frontotemporal degeneration, or a sub-cortical dementia.
Whether you are planning in advance or thinking about this when end of life may be days away, thank you for considering brain donation! We are sorry for the stress you are under: coping with neurological decline is not easy. We can make the brain donation go as smoothly as possible.
Arrange a Brain Donation
...to receive a confirmed diagnosis and to contribute to the search for a cure.
Learn more about PSP
The key symptoms of PSP are bradykinesia (slow movement), rigidity (stiffness), and postural instability…in other words, parkinsonism. As a result, we need to look deeper for distinguishing symptoms and treatments.
What Others Are Saying
“You and your organization are a comforting need for those of us on this journey and I shall include you when and wherever possible on my future journey of PSP awareness and research. Thank you from the bottom of my heart for the work and service you provide.”
“Your help through this process of Allan's [my husband's] PSP has been so wonderful. I especially appreciate your sending details about signs of the end-of-life at this critical time.”
“We love the impactful work Brain Support Network does in supporting individuals and families facing neurological disorders!”
Frequently Asked Questions
Do I have to 'pre-register' to be a brain donor?
BSN recommends that families plan the brain donation when the end-of-life could be within six months. Advanced notice lets us make arrangements during business hours and complete preparations in advance--no matter how busy our staff might be when you contact us. That said, we do our best to accommodate every family that contacts us, even after death has occurred. Remember that brains must be recovered within 24 hours of death if they are to be suitable for research.
What are common motivations for brain donation?
Brain donation may be especially appealing to those who:
Have received multiple, conflicting diagnoses, making the diagnosis uncertain, have received one diagnosis from a neurologist but the intended donor or family thinks this is an incorrect diagnosis,
Want to do whatever he/she can to support research for a cure for any neurological disorder,
Want to honor a family member’s battle with a neurological disorder,
Want to do something to fight back against a neurodegenerative condition, or
Want to minimize suffering for future generations from
neurodegenerative conditions.
What's the process of working with Brain Support Network to donate a loved one's brain (or my brain)?
For a high-level summary of the process, see this outline.
Once the family makes a first inquiry to Brain Support Network (BSN), BSN reviews with the family general information about brain donation, requirements, and process.