Ellie's Half Marathon Challenge for PSPA

[HelenPSPA]

An Essex-based woman is training to take part in a half marathon to raise awareness of a rare brain disease called Progressive Supranuclear Palsy (PSP).

Elloise Charles, also known as Ellie, decided to take part in the Royal Parks Half Marathon on 11 April for her father, Alan Charles, was diagnosed with the disease last year.

Following years of misdiagnosis and experiencing symptoms such as falling backwards, swallowing difficulties and eye sight problems, Ellie’s dad received his PSP diagnosis in November 2020.

Since PSP is not well known, Ellie decided to take on the half marathon challenge not only for her dad, but to raise awareness of the disease and fundraise for PSPA.

Ellie said: “I decided to take on the Royal Parks Half Marathon after my dad received his PSP diagnosis. Little is known about the disease and the heartbreaking part is that there is no cure or treatment, and day by day we are seeing my dad’s health deteriorate.

“My half marathon training has already begun and as a novice runner, I am already finding it challenging. But I will keep persevering as I want to create as much awareness of PSP as I can and I will be sharing training updates and my family’s experience of PSP on my Instagram @cure_psp.”

If you would like to join Ellie and #TeamPSPA for the Royal Parks Half Marathon on 11 April, you can register your place for just £20 when raising £450 for PSPA, at pspassociation.org.uk/event...

[daddyt]

Raising PSP awareness creates understanding, understanding creates support - support that will lead to treatment - cure.

[10greenfingers]

Hi Helen. It is great to see you are fundraising for PSP though appreciate it would be best in many ways if there wasn't the need. I fully understand the commitment you have made and wish you a safe and successful challenge. My Mum, with a similar story as your Dad, has recently been diagnosed with PSP too and I'm planning an Action Challenge fundraiser for later on in the year. Whereabouts do you live in Essex? I'm Ilford.

[HelenPSPA Administrator PSPA in reply to 10greenfingers]

Morning, I posted on behalf of Ellie who is taking on the Half Marathon challenge. You can keep up to date with Ellie's updates on her Instagram @cure_psp

[jmorrish]

Well done for doing this, it’s motivating me to do something near where I live in Manchester. My Dad got his confirmed diagnosis in October 2020 after over 3 years of battling for answers! Parkinson’s nurse thinks he’s in stage 3. We need to raise awareness within health professions too. All too often medical professionals tell us they’ve never heard of it, so there’s little chance of recognising the symptoms early on. Heartbreaking to watch my Dad deteriorate, wish we’d found out sooner so we could have spent less time focusing on finding out what it was and more time enjoying the time he had left.

[10greenfingers in reply to jmorrish]

Hi. My mum was diagnosed in July 2020 after many years of us being told she was frail due to old age. It wasn't until she had a major fall and taken into hospital that by chance a PSP consultant saw her and diagnosed. I agree we have to raise the profile of this cruel condition. The health professionals tab on PSPA has great content and I've printed off the early signs poster and sent it to local drs surgeries. I've done a few charity projects and definitely recommend it. It gets your cause advertised and also gives you opportunities to talk to people individually about your connection. Funding is so important to these lesser known conditions and our loved ones deserve someone doing battle on their behalf. Go for it!