I hope you don’t mind me contacting you with this enquiry.
It has often occurred me that PSP lacks support and recognition due to the complex name of the illness - it remains a medical term difficult for the average person to understand and is also a mouthful.
I lost my mother to PSP in August 2013 and feel that trying to discuss this illness often results in a blank expression and people sometimes switch off more than they would if i mentioned breast cancer or Parkinson’s.
I feel the name really only means something to those who have been directly affected by the illness . I wondered if the issue has ever been raised and how I could go about finding out more. I feel it makes raising awareness for individuals as well as PSP Association more difficult than it would if it was renamed to something more simplistic.
Any information/ opinions would be appreciated.