My step-father, John started experiencing symptoms of CBS about 7 years ago and it took about that length of time to get an actual diagnosis. This is a progressive neuro degenerative disease and it is hard to live with, for John, my mum (his primary carer) and the whole of his family.

I am lucky not only to have a amazing father, but wonderful supportive step father as well. John came into my life when I was 14 years old and has been a pillar of support. He is an extremely measured and patient person to say the least! He willing took on 3 teenage girls, not an easy feat, especially when he was used to boys. He was also the only one who could successfully keep his cool with us whilst teaching us to drive.

He has been a constant support throughout our teens, careers and with our own families. John's absence from my wedding last year was a cloud on an almost perfect day.

PSPA is the only UK charity to creating a better future for everyone affected by Progressive Supranuclear Palsy and Corticobasal Degeneration.

We will do this by: Providing information and support to enable families living with PSP & CBD to live their best possible lives; Improving the quality of life for people living with the condition via research and awareness raising; Putting the voice of the PSP & CBD community at the heart of what we do.