The PSP Association

The PSP Association

Charity information

The PSP Association

Working for a world free of PSP

Founded 1994

  • Mission statement

    The PSP Association is the only national charity dedicated to supporting people across the UK affected by the degenerative brain diseases Progressive Supranuclear Palsy (PSP) and Cortico Basal Degeneration (CBD).
    As common as Motor Neurone Disease, but far less well known, PSP progressively affects balance, mobility, vision, speech and the ability to swallow. Average life expectancy is about seven years from onset. As yet, there is no effective treatment or cure for PSP.
    Northamptonshire family Michael and Sara Koe formed The PSP Association in 1994 following Sara's PSP diagnosis. They were appalled and devastated to learn that so little was known about PSP and there was nothing that could be done. They set the charity a challenging mission... 'to conquer PSP through effective research, education, welfare and communication'.
    The charity's work focuses on three key areas 1) research into the cause and treatment of PSP; 2) care and support for people with PSP or CBD, their carers and families and 3) raising awareness of this PSP and CBD with relevant medical and social care professionals across the UK.

  • Aims

    The PSP Association aims to:

    • To ensure that people living with PSP and their carers can have access to the best possible care and support, that will enable them to be cared for at home for as long as possible.
    • To promote and fund research that will lead to early and accurate diagnosis, and an eventual cure for the disease.
    • To promote best practice in the care of people with PSP by education and training among health and social care professionals.
  • Overview

    Established: April 1994

    Registered Charity Number: 1037087

    Board members: 10

    Full time staff: 18

    Part time staff: 2

    Volunteers: 100

    Phone number: 01327 322418

    Address: 167 Watling Street WestTowcesterNorthamptonshire NN12 6BX

    View charity accounts on the Charity Commission website
  • Specialist Care Advisers

    Our plan is to help individual PSP patients and carers obtain the specific services they n... More
  • PSP clinics

    To provide specialist support during neurological clinics
  • Local support groups for PSP patients and carers

    Local support groups help people with Progressive Supranuclear Palsy to break out of the i... More