Project - Charity Build- Narcolepsy UK

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glent

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My son Connor is 12 he diagnosed with Narcolepsy and Cateplexy in 2011. He wishes to do something very unique to raise awareness of his conditions .
Hes built two pcs and those who support his him and his charity can win these builds

About Connor and his project

What is Narcolepsy and Cataplexy?

Narcolepsy affects energy levels, its referred to as ES (Excessive sleepiness ) or EDS (Excessive daytime sleepiness ) This means Connor has an overwhelming urge to sleep more often than average, This can and will happen involuntary,of course this is frustrating for him.

Many assume its a trivial thing thinking it can't be that bad...but its more thea been just being tired.

A long time sufferer said this to me
“Imagine starting every day feeling exhausted like you've never slept for days, you can't just catch up on sleep, it doesn't work like that”

its a constant and can very difficult to do day to day tasks. Most of the time he can't watch all of his favourite movies, he can't be out with friends for long periods, he can't bathe without someone being near by incase he falls asleep. People often joke about saying it would be a blessing, its really not.

While the severity between one case and another varies, before his change in lifestyle and regular medication he would often sleep in excess of 20 Hours a day


Cataplexy is the condition Connor does not tolerate very well. A Cataplexy attack is cost most often by laughter or other triggers including embarrassment or shocks
For some temporary weakness in facial muscles is common, Connor case causes frequent collapses, not being able to move from seconds to minutes.

There are some other unpleasant symptoms such as hallucinations and sleep paralysis

Unfortunately Narcolepsy tends be difficult to diagnose, it often is misdiagnosed as other similar conditions. Some cases have taken 10 years to confirm.
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With the correct medication and lifestyle changes, Connor can lead a relatively normal life. Sadly there is no “cure” for Narcolepsy yet . Connor and other sufferers would hope that one day soon there is.

He wants to raise much needed awareness of Narcolpesy & Cataplexy. Connor had a simple idea, using technology as an incentive to raise awareness. We discussed his plan and reached out for support. His requests where filled by an unbelievable list of sponsors.

The sole charity in the UK Narcolpesy UK does a phenomenal job of supporting and advising so many people. All funds raised are donated direct to them.
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Narcolepsy-UK-logo-resized.png

For more detailed information please visit

http://www.narcolepsy.org.uk



What is the event?

This is a Donate to enter event -a virtual raffle



How does it work?

Every donation secures a place in the raffle (like a Virtual Ticket). From the list of donators, Winners will be randomly picked and awarded the prizes ( using random.org)



What is the prize(s)?

Two complete Computers. Pre assembled by connor and ready to use. The Main prize has windows preinstalled.
Plus runner up prizes such as cases and hardware.



Where did the prizes come from?

Every single piece of hardware was sponsored (given) to Connor, The parts have come from around the world, from individuals ,shops and the manufactures themselves.



Donations from anywhere are welcome. Unfortunately due to complications with shipping costs, tax and imports duty.
This is a UK only event.


Interested? Then head over the link below and enter

http://uk.virginmoneygiving.com/ConnorsBuild



Project History
24th April 2012 Sapphire Sponsors the project
8th May 2012 Antec Sponsors the project
16th May 2012 SteelSeries Sponsors the project
17th May 2012 SteelSeries items unboxed
18th May 2012 OverClockers UK & Gigabyte Sponsor the project
27th May 2012 Early mock design for ANTEC build
29th May 2012, Number of planned builds DOUBLES - Fractal Design Sponsors the project
31st May 2012 Crucial & Corsair Sponsor the project
3rd Jun 2012 More boxes arrive! Donation page opens
6th Jun 2012 Noctua & ECS sponsor the project
7th Jun 2012 Crucial & Corsair goodies unboxed
12th Jun 2012 Runner up prizes teased
14th Jun 2012 Work begins on the ANTEC Build-Coolermaster Sponsors the project
16th Jun 2012 A look at items recived
19th Jun 2012 Painting the ANTEC Build
20th Jun 2012 Local Media print Connors story
29th Jun 2012 Zotac,XFX and TMB Create sponsor the project
30th Jun 2012 Ideas for paint design
7th July 2012 Fractal Desing Build begins - Intel, Patriot memory, ShakMods & TTeSports Sponsor the project
13th Jul 2012 Paint problems but Plastikotec omes to our aid and sponsors the project
20th Jul 2012 Bad week, paint issues continue...
23rd Jul 2012 Spirits lifted as the project is saved! Team OcUK FTW



Sponsors for Build one, 1st place prize in the draw

newfractal.png






Sponsors for Build TWO (2nd place prize in the draw)
hazared.png




Runner Up Prizes
CoolerMaster Cosmos II case
CoolerMaster 850W PSU + Fan Controller

coolermaster.jpg





Good luck to all and thank you to ALL of his sponsors and supporters for helping this idea become reality!

Todays current total as of 16/08/12 is £1,193.88 !
The original target has also been reduced from £2.000 down to £1,500
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Remember this is most importantly about raising awareness. One day soon we hope for a "cure"

if donating is not an option for you, you can help us promote the raffle event via Facebook & Twitter

Connors Facebook page
www.facebook.com/ConnorsCharityBuildForNarcolepsyUk

Thank You
John

First post edited 28/08/2012
 
Last edited:
Wow, this is great.

Good luck with this dude.

No idea what the GPU is, clearly ATI, but beyond that, yeah..... Interested to see which case manufacturer helps out :)

kd
 
dirtychinchilla said:
Good luck Connor, I'll be watching this Well done on getting all those sponsors too!

You haven't put the link for donation though...
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Thanks, reason we have not posted links is due to t&c still being preped. They'll be here soon



King Damager said:
Wow, this is great.

Good luck with this dude.

No idea what the GPU is, clearly ATI, but beyond that, yeah..... Interested to see which case manufacturer helps out

kd !
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Thanks mate, wouldn't be much fun if I was just to show the rest of box haha



iB CoMpL3XiTy said:
I love boxes !
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So do We :D

paradigm said:
Nice to see that this is already rolling forward

Fancy a large Narcolepsy UK sticker or twenty? !
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My friend ! Thanks :D We'll be making contact in due course



King Damager said:
Out of interest, what's your son's trigger for his Narcolepsy? Or is it just general extreme tiredness?

kd !
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Narcolepsy causes Connor to have constants extreme tiredness, As for triggers you might be think of Cataplexy. Triggers such as shock,fear,excitement laughter etc can cause him his to essentially collapse. These episodes normally only last seconds , but always have the risk of him hurting himself. Check out the Website in the first post for more information but of course I'll answer any other questions you have .



Musty Pie said:
This is a great idea! Good luck and will keep checking back!
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Thanks do keep checking back

Jak3 Mac said:
The best of luck from me! I really think this is a great and unique idea!
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It is , It's a very unique and very personal project. Raising awareness, generating funds the charity. Connor learning and doing something he loves and of course the cherry on top is a lucky sole winning the thing :)

Another parcel due in the coming days :)
 
I can donate some laser work if you like. Let me know if you have any plastic /wood part requirements, and/or any etching of same.
 
some very heartwarming projects going on at the moment, keep it up, unfortunatly i cant think of anything i can donate.
 
dirtychinchilla said:
Excellent, I await the donation link, and some pictures!
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Soon :)

PGdude said:
This is cool, I look forward to seeing it progress. Well done to you and Connor for getting this started.
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Thanks we're all very proud of Connor, we can't wait for the end result

PhillyDee said:
I can donate some laser work if you like. Let me know if you have any plastic /wood part requirements, and/or any etching of same.
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Fantastic my friend, Email received will be in touch in due course. :)

ZZZAC said:
some very heartwarming projects going on at the moment, keep it up, unfortunately i cant think of anything i can donate.
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Thanks for that, don't worry we're doing very well with hardware currently via many names we'll be announcing soon




Unfortunately Connor has not being so well lately, lots of hospital appointments have kept us rather busy.

To make matters worse he's recovering from a scratched cornea, our youngest (13 months old) gave him a rather unpleasant poke in the eye over the weekend, Doing well today however.

Have a few things to verify via email and then more pics in the next day or two.
 
dirtychinchilla said:
I hope he gets well soon; can't be something easy to cope with!
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Can be tough, worth every second though ;)



Couple of more teaser pictures, if you know what they are don’t spoil it just yet :)



This is the contents of the box I posted a few days ago :) Facebook users might see this around somewhere tomorrow
antec22.jpg


This is a new delivery we have had.
fract22.jpg
 
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Look forward to the unblurred version, will put the first donation on the virgin money page tomorrow unless someone beats me too it! If I do it now I'll probably put the wrong figure in and not be able to feed myself, too tired.
 
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There we go, done. Can't do gift aid just yet as a student.

Best of luck with it all.

Bump!
 
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