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Between 5% and 15% of people living with a dementia receive a diagnosis of a rare or young-onset dementia. The diagnosis of a rare dementia brings with it a set of unique and complex challenges. For example, 30% of people living with a rare dementia first receive an incorrect psychiatric diagnosis. There is a widespread lack of understanding about rare dementias and a shortage of dedicated resources to support people affected by rare dementias.

My mum, Cecilia, was diagnosed with young-onset dementia (PCA) at the age of 55. It has been a difficult 5 years for my Mum and our family, as her condition has deteriorated through the different stages of her dementia. 

There is a definite lack of understanding amongst the medical and caring community for young-onset dementia so I am running the London Marathon to raise awareness for Rare Dementia Support.

Rare Dementia Support (RDS) is a UK based charity that works to support people affected by five rare dementia conditions, including PCA. Their aim is to help people affected by one of these rare dementias feel supported and valued.

The young onset-dementia my Mum has is called Posterior Cortical Atrophy (PCA). You can read more about it here:

http://www.raredementiasupport.org/posterior-cortical-atrophy-pca/

For those of you familiar with the writer Terry Pratchett, it is the same dementia that he had.