After her mother Myrtle Ellis was diagnosed with Posterior Cortical Atrophy (PCA), Susie Shaw decided to raise some money for people living with PCA and subsequently co-founded the Myrtle Ellis Fund (now part of Rare Dementia Support). This pioneering charity is one of the few in the world supporting those with rarer dementias and Susie continues to fundraise and raise awareness.
Please tell us about some of the work you have done to support, improve and contribute to the lives of, people with dementias?
I initially raised £9,500 from a 5km fun run, and a further £2,000 from a "School Days Party" organised with my sister Diane. Rather than simply adding this amount into the general pot, it was agreed with the Chief Executive of The National Brain Appeal to create the Myrtle Ellis Fund (MEF) to provide support, information and advice to individuals living with PCA and their carers.
We had our first PCA support group in 2007. The Fund then became the PCA Awareness Fund and a couple of years in, we had the first ever International Conference for PCA. We then provided 3 other support groups - for Primary Progressive Aphasia (PPA), Familial Alzheimer’s Disease (fAD) and Familial Frontotemporal Dementia (fFTD) - and, on 29th February 2016, merged with Frontotemporal Dementia Support to create the Rare Dementia Support fund.
Since 2014, I have been running an annual Simultaneous Global Virtual Quiz in November, with teams taking part from all over the world, which raises up to £3,000 each year for Rare Dementia Support.
What was your motivation for getting involved in the field of dementia?
My mother was diagnosed with PCA at the age of 67. It was difficult to get a diagnosis - she was seeing upside down and struggled with hand-eye coordination and with reading and writing; something she had done avidly her whole life.
Naturally, the first thing we did was go to the opticians, and they could find nothing wrong with mum’s sight. We visited GPs and they could not tell us anything. This is a common experience for people living with PCA and, especially at that time, there was a lack of support and knowledge. So I decided to take action.
What would you say has been your greatest achievement or highlight?
Ultimately facilitating support for people living with the 5 rarer dementias, their families and carers through Rare Dementia Support, to enable people to realise they are not alone.
To keep doing what I've been doing for the past 11 years! We are running our global quiz again this year and the next one is on Saturday 24th November. Find out more here.
If you could change one thing now to improve the lives of people living with dementia, what would it be?
Public awareness of rare dementias, and in particular, that GPs and opticians should have an understanding of PCA.