My dad has been fully diagnosed with an extremely rare neurological diseases called Progressive Supranuclear Palsy after years of misdiagnosis, including Parkinson’s. 

In the UK there are around 4000 people diagnosed with PSP, the heartbreaking part is there is little known about the disease, with no cure and no treatment and little to no funding for research. 💔

It presents itself in the most evil ways, losing all motor and cognitive function over the course of a few years. The ability to speak, walk and eating all become near enough impossible. Day by day we are seeing my dad’s health deteriorate, I will never have the words to explain how heart breaking it is to see someone you love so much having their life taken away bit by bit from this hellish disease.

Because of the lack of research and information available, each step and new symptom of this disease is experienced through living with it. We are not given timelines but are forced to live in perspective of this disease. 

Having a very proud mum and dad has meant that I have consulted with them on me raising awareness about this disease, and talking about my dads story, there are parts which will remain private which are too devastating to talk about. 

Very few friends and family know about my dads disease and what him and my mum are living through day by day. We haven’t shared the reality of our lives and the daily grieving and energy which is absorbed by this disease. 

I want to create as much awareness of the disease as I can, I can’t sit back and just watch this disease take over without trying to do at least something. 

I am going to be fundraising and raising awareness of PSP, as best I can. Initially I am going to be running a half marathon at Hyde Park in April. An update from the 21st feb is that Melin Chigwell have donated a prize to be donated for raffle, tickets can be purchased by donating £20 for each ticket.

Any help in raising funds and awareness is extremely appreciated and donations will be given direct to the PSPA, a charity dedicated to research and support of those suffering with Progressive Supranuclear Palsy.

Thank you so much for your support and your donation 💗

Ellie xxx

PSPA is a national charity providing support and information to people living with PSP and CBD, while funding research into treatments and ultimately a cure. We aim to improve the lives of everyone affected by PSP and CBD. We rely entirely on voluntary donations, and that's why we need your support.