Dear family, friends and colleagues.

It would mean the world to me if you could help me on my mission to raise £6,500 for The National Brain Appeal's Rare Dementia Support Fund.

It's a genuinely unbelievable charity that does groundbreaking work for people living with very rare forms of dementia; a disease that has affected a close family friend, Gemma Illingworth.

Why RDS?

Ben and my brother George met at school when they were in their early teens. They bonded over both being from the North as well as being extremely family-orientated.

Andrew, Susie, Ben, Gemma and Jessica form the Illingworth clan. A couple of years ago, Gemma (aged 30) was diagnosed with posterior cortical atrophy (PCA), a rare form of dementia that affects the area of the brain that deals with visual processing and can initially cause difficulties with seeing what and where things are.

To put this into perspective, there are 42,000 people in the UK with a form of dementia under the age of 65. Around 1 in 10 have a mutation linked with PCA. A 0.006% chance of being diagnosed.

The first symptoms of PCA tend to occur when people are in their mid-50s or early 60s. Gemma is just 30. Statistically, perhaps the youngest case, globally, on record. With no history of PCA in the family, this is an incredibly rare spontaneous mutation and she genuinely could not have been more unfortunate in coming head to head with such an affliction at such a young age.

PCA simply means ‘back of the brain shrinkage’ and it refers to the progressive loss of brain cells, particularly in brain regions that process visual and sensory information, such as the occipital and parietal lobes, similar to those that occur in Alzheimer’s disease.

The causes are unknown, and no obvious genetic mutations are linked to the condition. Because of the lack of understanding of the condition, PCA is devastatingly not a treatable condition.

Symptoms develop fast with difficulties with visual tasks such as reading a line of text, judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation, and difficulty manoeuvring. Many diagnosed patients also experience anxiety, possibly because they know something is wrong, with loss of memory affected in later stages.

You can watch an extremely moving video from the charity here: https://www.youtube.com/watch?v=jekW8Z93LMw

Who are the charity?

Given PCA is so rare, many healthcare services do not have much experience supporting people with PCA.

As you can only begin to imagine, receiving a diagnosis of PCA can be isolating and can have an unbelievable impact on family members, friends and carers.

The right support must be available, not only for the person with PCA but also for their loved ones. And that’s what RDS does. They support with accessing help, information, advice and support. They provide opportunities to speak to professionals and ask questions, and their support groups connect with others in similar situations.

I believe the charity has been instrumental in providing holistic support for Gemma and her family, as they do for so many others.

Its incredible how Ben and his loving close-knit family want to spread awareness of PCA to help improve the lives of patients and their families, and I'm honoured to be doing this on behalf of them and the charity. I hope it can go some way to provide peace of mind for patients and families like Gemma’s.