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Robyn Langton avatar
Robyn Langton

Robyn takes on running

I have signed up for Dumfries Half Marathon for Brain Research UK because My wonderful Granny Grace was affected by CJD

168 %
£840.55
raised of £500 target
by 54 supporters
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  • In memory of: Grace Smith
  • Event: Edinburgh Marathon Festival 2016, 28 May 2016 to 29 May 2016

Brain Research UK

We fund the best neurological research to improve the lives of those affected.

Charity Registration No. 1137560

Story

Thanks for taking the time to visit my JustGiving page. I have decided to run the Dumfries Half Marathon on 25th September in memory of my amazing Granny Grace, who contracted Sporadic Creutzfeldt-Jakob Disease (CJD) in 2010 and sadly lost her life to it. Isabella Grace Smith (Granny) was a true gem and had a heart of gold. Along with her dear husband, Papa John, we were the most spoiled grandchildren going and loved nothing more than staying over at Granny and Papa's house. Still going swimming twice a week and 'raking around' in her 70s, Grace was struck with CJD which changed her life completely at a scarily fast pace.

CJD is a rare neurodegenerative condition that affects tissues in the brain, nerves and spinal cord. Despite being the most common form of CJD, sporadic CJD is still very rare, affecting only one or two million each year in the UK. I always said my Granny was always one in a million.

Symptoms of CJD include:

  • loss of intellect and memory
  • change in personality
  • loss of balance and co-ordination
  • slurred speech
  • vision problems and blindness
  • abnormal jerking movements
  • progressive loss of brain function and mobility 
The progression of my Granny's condition deteriorated very quickly. A very fit and healthy lady had suddenly turned into a frail, dependent 'patient' at DGRI Hospital in Dumfries and Galloway. It was a difficult time for the family as is any serious illness. However, this was made more difficult in the agonising time it took for her diagnosis, and the lack of knowledge around how to manage this condition due it being so uncommon.


Last year, the Brain Research Trust funded two PhD studentships researching CJD and related prion diseases. I want to raise as much awareness of this disease as possible. We had no idea for months what was wrong with Granny, her symptoms began with loss of balance and forgetfulness which quickly deteriorated. Whilst there is no cure for the disease just now I am hoping more research will help come up with some solutions or ways of identifying earlier so less people and their families have to experience this awful disease.

Having only ever ran as far as 5K, I am ready for the challenge of a half marathon and will be updating you all on my progress as I'm sure there will be many failed attempts before the big day! I am also planning on doing a few fundraising events in the lead up so I will keep you posted as your support is greatly appreciated.

Click here for more info http://www.brt.org.uk/creutzfeldt-jakob-disease-cjd

Thank you! 

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