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Thread: Project - Charity Build- Narcolepsy UK

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    Project - Charity Build- Narcolepsy UK

    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.

    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.


    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





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







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




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






    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
    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 by Glent; 30-08-2012 at 10:48 AM.

  2. Received thanks from:

    blueball (14-05-2012),CAT-THE-FIFTH (14-05-2012),hnosyalnif (14-05-2012)

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    Re: Project - Charity Build- Narcolepsy UK

    Very cool project and incredibly laudable from such a young man. Do keep us updated and all the best to you and your son.

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    Re: Project - Charity Build- Narcolepsy UK

    What a great idea Connor!

    Would love to see a blog with pictures as you build.

    Maybe even get enough supporters and donations to build computer and donate them to people in need.

    Please keep us posted as you progress in this wonderful project.

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    Re: Project - Charity Build- Narcolepsy UK

    Quote Originally Posted by Glent View Post
    @mods should this need to be moved elsewhere go for it
    Happy to have it here, all the best with your build.


    Do keep us updated

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    Re: Project - Charity Build- Narcolepsy UK

    If it's not just companies that you accept donations from then I have 2 x 120mm unused Arctic Cooling fans that I would gladly donate. Tell the wee man good luck.

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    Re: Project - Charity Build- Narcolepsy UK

    Quote Originally Posted by chuckskull View Post
    Very cool project and incredibly laudable from such a young man. Do keep us updated and all the best to you and your son.
    Thank you, regular updates for sure.

    Quote Originally Posted by doyll49 View Post
    What a great idea Connor!

    Would love to see a blog with pictures as you build.

    Maybe even get enough supporters and donations to build computer and donate them to people in need.

    Please keep us posted as you progress in this wonderful project.
    Thank you for the kinds words, as above will be making regaular updates.

    Quote Originally Posted by bigdaz84 View Post
    If it's not just companies that you accept donations from then I have 2 x 120mm unused Arctic Cooling fans that I would gladly donate. Tell the wee man good luck.
    Thank you that is most generous. As we proceed we may take you up on this . Good luck passed to Connor

    OK then time to leave you a few images,Hopefully these keep you busy for a short time. If you do recognize them please don't spoil it for the rest

    *

    Facebook users may have already seen the revealed version of this image


    And this one too. Not revealed . ..yet






    Also we should have some new delivery's due this week or early next.


    To clarify any questions regarding the donation Link and why it is not present (YET). The sole reason I have to yet to post is simple.

    While I'm sure their will be many that would donate regardless of the specification of the Rig, I think it only fair for us to share all the sponsors and what they have offered first.

    That way everyone knows exactly what they have a chance to win. We hope to have a complete list of parts soon. These things do take time .

    We are extremely grateful for so many are making time for us. These companies/individuals have very demanding work loads. Its amazing what they are doing to aid this project.

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    Re: Project - Charity Build- Narcolepsy UK

    Little update...
    this little lot should keep you all interested

    One of the teaser shots above revealed


    Also We can announce a Sponsor Today...


    Knock-Knock this arrived


    Time to open it up

    Keyboard: 6Gv2
    http://steelseries.com/products/keyb...eelseries-6gv2

    Mouse – Xai
    http://steelseries.com/products/mice...ries-xai-laser

    Headset – Siberia v2
    http://steelseries.com/products/audi...ies-siberia-v2







    Thanks to SteelSeries for helping out.



    Right then, Who wants some more news and unboxed shots?

    This one infact.


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    Re: Project - Charity Build- Narcolepsy UK

    Want some more?


    Huge news to share today...

    Awesome bag!


    What's inside?


    Gigabyte awesomeness


    Yummy Hairibos




    Thanks to both Overclockers and Gigabyte for this , This is a joint donation and they both deserve much respect






    Tell time next friends

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    Re: Project - Charity Build- Narcolepsy UK

    Incoming news soon! also work begins this weekend if Connor is upto it

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    Re: Project - Charity Build- Narcolepsy UK

    Sorry guys we didn't get any real work done this weekend.

    The weather has been so nice and some overdue time with family took prioirty. Which was was needed after the amount of time me and Connor have spent on this project already.

    We did managed to squeeze into a small amount of time to mock up a window cut for the case.




    The Antec One is really nice case for the price. Just needed a little something we thought.

    We've had a few shipments in the last few days and another due on Monday. This part list for this build minus a CPU is done now. Will update post one with system specs on Monday

    The amount of things still announce is will blow your minds, Really need to keep pushing for a CPU support though

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    Re: Project - Charity Build- Narcolepsy UK

    First post updated

    Keep any checking back for news regarding ...
    Build two !

    Can finally reveal this image from earlier.




    Links from the Charity’s website to Connors Facebook page and Donation page have been up for a little while. I'll put the Terms and conditions up asap. Feel free to start donating if you wish.

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    Re: Project - Charity Build- Narcolepsy UK

    Current sponsors for Build two...
    Pics to follow.










    And of course we have more to share soon

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    Re: Project - Charity Build- Narcolepsy UK

    Start donating!
    http://uk.virginmoneygiving.com/ConnorsBuild
    T&C's are on the donation page also

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    Re: Project - Charity Build- Narcolepsy UK

    Thank you to our latest sponsors..




    &






    much more coming..

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    Re: Project - Charity Build- Narcolepsy UK


    Thanks to our new sponsors!







    16GB DDR 3 Crucial ballistix!


    &





    Corsair Hydro H80 and Force GT 120GB SDD!

    Connors really not doing to well today so no work photos yet, The final pieces for build two should be here soon, We'll get to work asap.

    Huge thanks for all the support guys, pardon the cliché but this means so much to him!

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    Re: Project - Charity Build- Narcolepsy UK

    Support is still pouring in rather than aim for more builds, We are now in a position to offer runner up prizes.

    More news to follow but I will leave this teaser image for one of the prizes!



    it and others will be arriving in the coming days.
    Till next time friends and thanks for all the support

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