Blog: Charity updates

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Walk A Mile In My Shoes challenge update!

5 July 2021

Narcolepsy UK would like to thank Katie, Mandy and Laura for taking part in our Walk a Mile in My Shoes fundraising campaign. They have been enjoying doing this so much that they have shared some photos of their walks.

Find out more about the campaign by following the link below:

https://donate.giveasyoulive.com/campaign/walk-a-mile-in-my-shoes

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Awareness video - Don't Make Me Laugh

19 June 2021

I’m back!

Last time I appeared it was in Aintree & across the wider Liverpool area but this time, I’m going UK-wide or maybe even global!

Please help me to raise awareness by sharing my films, giving me a like and sending me to people who you know would like to understand more about narcolepsy.

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Notice of Temporary Service Delays

15 June 2021

Please be aware that we will be updating some of our backroom systems this week, from 16th June 2021. There may be some temporary service outages and will likely be delays in receiving or responding to communications. We will endeavour to keep disruption to a minimum and hope to be back to full service before the end of the week.

We apologise for any inconvenience this may cause.

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Walk A Mile In My Shoes challenge update!

7 June 2021

We’ve had a great first week of our Walk A Mile In My Shoes challenge. Join us today!

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Position statement on vaccination against COVID-19

10 January 2021

Given the causal link between the deployment of the Pandemrix swine flu vaccination in 2009/10 and the sudden onset of narcolepsy in some individuals, Narcolepsy UK sets out its position with regard to the ongoing vaccination campaign against the SARS-CoV-2 virus.

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Christmas closure

19 December 2020

Narcolepsy UK will officially be closed from Tuesday 22nd December 2020 until Tuesday 5th January 2021.

Any messages received during this period will not be seen until we reopen. We are sorry for the inconcenience but as a small team this is unavoidable.

For emergency contact ONLY please call our Operations Manager - Nicola Rule @ 07920 650552

We would like to take this opportunity to wish you all a healthy and happy festive period and hope for good things in 2021.

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#NarcolepsyStories: Heather Murphy

9 October 2020

One day I was a child who could get up at 6am and stay awake until late in the evening. The next I just couldn’t stay awake. About a year on, I experienced cataplexy quite suddenly. It was not gradual like the tiredness. I would collapse whenever I laughed or even just with the joy of seeing friends.

If a child came to you with seizure-like symptoms wouldn’t you take them a little more seriously?

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#NarcolepsyStories: Lee Martin

6 October 2020

Sleep is as vital as drinking water and people who sleep well simply cannot grasp just how devastating a sleep disorder like narcolepsy can be.

I've had narcolepsy for as long as I can remember. But I went undiagnosed for almost two decades. Then, in my 20s, I had a cataplexy attack for the first time, my muscles suddenly giving way during sex. This was one of the most frightening experiences of my life because I remained conscious but had no idea what was going on and thought I must be dying.

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#NarcolepsyStories: Nikita Tyler

2 October 2020

I had turned 13 and over the summer holidays, I began sleeping in until the afternoon and taking naps for the rest of the day. I put it down to feeling a bit depressed because my best friend at the time had moved away. My mum put it down to me being a lazy teenager. By the time I went back to school in September, the urge to sleep was becoming more frequent and more intense. I remember my eyes starting to sting in a religious studies lesson and I just wanted to shut them. At home, after school, I’d sit down and be asleep at exactly the same moment.

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#NarcolepsyStories: Louie Gray

29 September 2020

I am 31. It is now very obvious to me that I have had narcolepsy and cataplexy my whole life. I am still waiting for a formal diagnosis. It sickens me to think of the adults – the parents, the teachers, the doctors – who watched a child unable to wake up, who looked on at a child who’d collapsed and did nothing but scream at him.

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